Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.

The problem with “real recovery”

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And we’re back with an eating disorder recovery related post and that is the issue of real recovery. I’ve been in the community on YouTube and the gram for many many years now and yes as a young influential gen z I did #realrecovery in my posts. But now I’m older and wiser and believe the message of real recovery is slightly problematic.

Back in the day it was associated with a minnie maud style, 3000+ calories a day, no exercise recovery. Yes that is probably the most ideal recovery when it comes to putting weight on fast in recovery from anorexia and maybe even for your mental state. Now I find it associated with going “all in”.

But other than the fact that “going all in” isn’t appropriate for all eating disorders or all eating disorder patients as it may cause refeeding syndrome or increasing urges to binge the term real recovery is problematic as it insinuates to many eating disorder patients that there recovery is only worth it if they’re never giving into thoughts, eating to their cravings and hunger ques and not using compensatory behaviours. Considering how perfectionistic anorexia sufferers in particular are this is even more problematic as they are likely to want the perfect recovery and the eating disorder may convince them that it’s all or nothing.

If you give into a behaviour your a failure. Your recovery isn’t real and so why should you bother.

The reality is every recovery is real recovery. Even if you do slip, you do act on thoughts and use behaviours. It’s still recovery, as long as you recognise what your doing and make a real effort to try and change it.

Of course the ideal of recovery is to never use behaviours, but that’s not realistic.

Recovery has ups and downs and often a lifelong process. Often when you recover from an eating disorder the thoughts will become less and less but they’ll always be there in the back of your mind and you’ll always have to keep check on them.

Sometimes you’ll be doing great, sometimes you slip.

Slipping or not making as much progress as other people in the community doesn’t mean your recovery is less real!

Recovery is not linear, not the same for everyone and does not have to be all positive!

You are sick enough for help: Mental Health Awareness week

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It’s the end of mental health awareness week and honestly we shouldn’t need one but there we go, we still do. Although we have come a long way there is still a significant amount of stigma out there.

Today I want to talk about, well write about how we all have mental health and there is never a point where you are not sick enough for help. Be that therapy, counselling or medication or even just that little bit of extra support from family, friends and collegues.

Mental health is just like physical health. Sometimes it can be good, sometimes it can be bad, sometimes it can be somewhere inbetween and just like physical health we shouldn’t ignore it if we start to feel it going because if we do ignore it, it will likely get worse and have a knock on effect on other aspects of our life. If it gets worse, it’s harder to then get back under control.

Just like physical pain, it’s better to take action when the pains a 3/10 because once it gets out of control more and more needs to be done.

Ignoring your mental health and sacrificing it above all else in life isn’t a badge of honour, it isn’t a way to show how brilliant you are or how hard you try. Your not being pathetic if you take time out, get therapy, take medication that’s okay. You are valid. You are worthy. You are not wasting the time of healthcare professionals. Even if you live in the UK and are reliant on the NHS. If you think you are having enough of an issue with your mental health that simple self care isn’t helping and only you know that you are worthy of help. See your GP, self refer to therapy.

I know living in the UK it can be hard, especially as a teenager because CAHMS often only help you in a timely manner if your on your death bed and even then…. I won’t waste words ranting about CAHMS though.

Many trusts now offer self referral to therapy, although limited in their use for people like me with currently mild/moderate anxiety and depression this can be really helpful  I have a lot more anxiety than depression though! I’ve been really quite anxious these past few days just because my family don’t understand ME but the second I try to explain they start spewing abelist language on me. That’s an anxiety that’s hard to overcome, when the people who are meant to support you most don’t see nor understand your illness but it’s kind of your fault because have you really tried but the issue is your too anxious to try.

That was a tangent…

Although there’s still waiting lists it’s not the 6 months to many years that can be found with other forms of mental health treatment on the NHS.

You are sick enough, you are worthy and you are deserving. Remember it’s better to prevent these issues arising at all, through rest, be selfish once in a while. Self care is important, you shouldn’t burn yourself out trying to be everything for everyone.

The problem with Illness Bingos

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These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

It’s okay to gain weight in isolation

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I’ve seen many a meme about weight gain in isolation. Which although funny and I relate really isn’t okay. Why?

Because these memes make it seem as though weight gain is something undesirable during this time and can be triggering for people recovering from eating disorders such as myself. We’re already in an unprecedented situation which is quite stressful for many people, this in itself can make it much harder for people in recovery from eating disorders to maintain that recovery. Memes, jokes and TikToks about the weight we’re all going to gain in this time simply isn’t helpful and may be enough to tip someone over the edge.

So I thought I’d pop in here and say that it is okay to gain weight during this time. Partly to reassure myself but also to reassure others.

We are going through a collective trauma. It’s only natural to eat more. Eat more “junk food” I hate that term, all food is good food in moderation. And we may be unable to eat as much fresh food as we would like. So yes, when combined with a reduced activity level due to gyms being closed and a lack of motivation/energy because we’re going through a collective trauma we may gain weight during this time.

But that’s okay. We are not defined by our weight. When was the last time you chose your friends based on their weight?

Hopefully never. We are worth so much more than our outward appearance.

From a health perspective yes being obese can give rise to health complications. But our bodies all have a set point, and you are unlikely to go much above that during this time. Furthermore, any weight you have gained is likely to naturally come off once this is all over.

From a health perspective, giving into restrictive eating disorder tendencies is going to be more damaging. Studies have consistently shown that being underweight is more damaging than being slightly overweight and coping mechanisms such as purging can actually be really dangerous and affect your electrolyte levels as well as risk damaging your esophegous and teeth.

It is okay to gain weight. It is okay to stick to your meal plan even if you think your less active and don’t need it. It is okay to eat what you want. There is nothing wrong with that chocolate, those biscuits or those crisps.

All food is good food and you deserve to eat it. Be kind to yourself. Just getting through the day is enough.

 

Mental health in the workplace

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Maybe this isn’t the best time for this blog considering the majority of the world is either not working or working from home but I feel like the same points still stand. And if anything not working/working from home can bring up more anxiety, and I predict even more so when the time comes to go back into the office.

A workplace environment can bring up a lot of anxiety, and resulting depression. It may also lead to eating disorder tendencies coming back due to anxieties about eating in front of people, not having sufficient breaks or not being able to eat the same food.

I know my mental health is often associated around the workplace. Be it thinking no one likes me or thinking I’m not good enough. I’ve also found myself getting anxious over how often I get up from my desk in the office environment. Especially in the office I’m in right now, where my job does not require me to get up to go to the printer on a regular basis.

I find as a perfectionist, the pressure gives me a lot of anxiety. The pressure to be perfect. Which is hard when I have chronic illnesses that make being perfect impossible.

If you find your job is negatively impacting your mental health remember it’s okay. Especially if transitioning to a new role. Take time for self care, take time for hobbies.

Try and find the positives.

Many workplaces also now have mental health first aiders if you find yourself in a crisis at work.

Remember to open up to others. Don’t bottle it up. You’ll likely be surprised to find that other people have been through similar things. We all have mental health and although we won’t all experience a clinically diagnosable mental illness in our lifetime, everyone will experience certain lows and a level of anxiety. Also sharing a problem really helps, bottling it up only makes it worse. If you have no one to share with 7Cupsoftea is a good website for this!

Don’t stress about what you can’t control. I know many people have been and are still worried about their job security during this pandemic. You can’t control that. So try not let it eat you away. By all means come up with a plan but don’t catastrophise.

It’s okay to get help. By this I mean professional help. If you feel you would benefit from therapy or medication then that’s okay. You do you. Do whatever helps you. (Providing it is safe, non-destructive and isn’t going to harm you or anyone else)

Finally, don’t beat yourself up. Your not weak. Your not pathetic. Your not melodramatic. Your human. Beating yourself up is only going to make your mental health worse.

Stay safe everyone. Look after your physical and mental wellbeing and I’ll see you in my next blog.

 

Eating disorders are more than the stereotype often reinforced during this week.

It’s eating disorder awareness week,  and having suffered from an eating disorder myself I always like to acknowledge it in some way.  To be honest this year inspiration is running thin. What with my current job destroying my mental health and meaning those eating disordered thoughts are creeping back in and this ME flare up which is relentless could god forbid I could just phone up and call in sick when I’m still climbing. That internalised guilt is real as well as internalised ableism.

Anywho on with the post!

I’ve been in the eating disorder recovery community for years, own recovery My own recovery starting in the summer/autumn of 2013. I’ve been through many a EDAW and had to deal with those before and after pictures. Before I knew better, I may have even participated in this trend myself.

But I feel as though these pictures, this type of awareness misses the point. It caters to the middle class white skeletal female version of what an eating disorder is. It caters to and perpetuates the stereotype which is not at all relatable or a representative depiction of eating disorders  as a whole.

This image and reinforcement ignores the fact that anorexia isn’t the only eating disorder, as well as that anyone can get an eating disorder. Anyone of any race, size, socio-economic background.

Most dangerously these pictures continue the misconception that an eating disorder is just about weight. This is damaging on all counts but most importantly on the likelihood of and the success of treatment for the disorder. I know myself, only a tiny part of my eating disorder journey was spent underweight and less of that was spent emaciated. I did have anorexia and further through my recovery compulsive exercise and orthorexia but this isn’t the case for the majority of eating disorder sufferers. Many more have bulimia, binge eating disorder or OSFED who may never become underweight or may be overweight. This misconception is also damaging for those who are underweight or who will in the future end up under weight. It can make everyone think they’re recovered when ED recovery is about so much more than weight restoration. An eating disorder is a mental illness, thus to recover the mind needs to recover and this can often take years.

Instead of posting images that focus on weight I believe we should take weight out of the equation and think about warning signs and symptoms of an eating disorder instead.

These can include:

  • Being preoccupied with weight/shape
  • Being preoccupied with food
  • Denying themselves food
  • Secrecy
  • Going to the bathroom straight after a meal
  • Constantly making excuses as to why they’re not eating
  • Not eating in public
  • Hiding food
  • Becoming withdrawn
  • Wearing different clothing than usual – i.e more baggy
  • Overexercising or exercising with the wrong motivations in mind.
  • Hoarding food
  • Taking laxatives/diuretics

There are many others, but these are just a few from the top of my head.  I personally use a traffic light system to maintain my own recovery. Green – alls good. Amber – I’m showing a few personal warning signs but not really acting on them. Red – I’m acting on my disordered thoughts. I find this really helps me keep check on myself.

I hope this helps raise some awareness and explain some of the issues with focusing on just one aspect of a very complex set of mental illnesses!

A week of prevailing and failing through pain and fatigue.

It’s time for another week in the life. This past week has been characterised by lots of pain, lots of fatigue, getting lost and climbing.

Monday was my first day on the difficult cases at work and it was so much more fun than work has been! I found it much easier to get through the day with a little more cognitive stimulation. I went for a climb in the evening and took it easy as my elbow was causing me pain at work and I didn’t want to do any further damage. I spent a lot of time chatting to people which is one of my favourite things about bouldering and did a lot of technique/route reading practice and flashed a purple (v3-4) for the first time ever! (Yes I flashed a V3-5 over xmas but different centre so I’m taking the glory again.) Although I love projecting I really want to get myself more consistent and that purple was an important step towards that.

Tuesday was a bad endo day and not great mental health day as I was a stressed out mess over the GP appointment I had the next day and pain wears you down. I got home and I just couldn’t and hilariously enough the pain just got drastically worse once I was home. Isn’t potentially having endo, potentially having PCOS, potentially having something else all together so much fun. Anyway. I went to bed early got 11 hours sleep and on we go to Wednesday.

I had a GP appointment and she actually took me seriously and listened. I had to find my way to the hospital after the appointment and got a little lost cause the cold and google maps drains your battery. But, I found my way and got the 3 viles of blood taken. I am also getting another ultrasound at some point. I think of the transvaginal variety. Absolutely not looking forward to that! Went into work for the afternoon and god were the cases bad. Or maybe I’m just a bad caseworker. I then climbed and not gonna lie my right bicep is still sore as we were doing endurance stuff and being me, I may have pushed it a little too far but it did feel really good to be in the training area, doing actual exercise like the old Han would be. I also resent a purple after the session which is mad! I’ve never resent a purple before. *Slight disclaimer here is yes in grades, yes 4 years ago, yes before I took 3 years out* It was another sign towards me slowly getting myself towards my goals.

Thursday was a horrific endo day. How I worked and smashed my stats I will never know. But anyway, I got home, applied for a law event and then accidently napped. Woke up, got ready for bed and then slept for another 10 hours.

I felt beyond dreadful on Friday. But I powered through the bad cases and got as many grants as I could. Didn’t hit stats but what can we do. Not much. I literally just crashed when I got home and ended up with that horrendous midcycle migraine. You know the one so painful that you can’t eat, can’t do anything, can’t tolerate any light but also can’t sleep. It was traumatic.

Nevertheless, I took myself on a trip to rock over on Saturday and although I didn’t explore the whole wall, I spent 4 hours there! My hands were a wreck! I really enjoyed the different setting and movement that I had to do even on “easy grades”. I also felt super fancy on duotex holds and flashed a super fun lil v4 and the first few moves of a v5!. I did however aggravate my elbow again and have somehow aggravated the left one as well. My pain was horrendous Saturday night so again late night but got 10 hours sleep and still feel like hell so trying to rest as much as I can.

Fear of getting back on that rope

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Yes. I am aware. We are becoming a climbing blog which is dangerous because I have v few decent bouldering pictures left and 0 rope pictures so stock pictures it is until I get new ones taken!

Anywho. This is highly related to mental health, chronic illness and why I boulder. For people who have followed me for a while you will know that when I climbed competitively I had anorexia. As I competed regionally, these were top rope competitions. I was a top rope climber and I did a little lead which I fell in love with instantly and need to relearn and find people to do so with.

Back in the day, climbing got very tied up with my eating disorder. How tight was my harness? Had I gained weight? Heck does my harness still fit me? People with eating disorders are also often perfectionists, very competitive and have to be the best. And here comes my I used to measure myself by a climbing grade.

But I used to beat myself up if I couldn’t do x climb as well as y. I literally pushed myself through beyond excruciating collar bone pain, two weeks after my injury to get up a relatively easy overhang climb because my partner did it easily and I didn’t want to show weakness. I then even lied to my climbing instructor about the pain because I didn’t want to show weakness.

Now climbing with multiple chronic pain conditions – yes I do push myself through excruciating pain. Yes I have partially dislocated hips, toes and shoulders on the wall. But that’s now. Now when I am also making an effort to be very self aware. And that’s okay.

But in 2014. It wasn’t and I recognise that now. A hobby shouldn’t turn into yet another facet of a severe mental illness.  So I stopped competing and 2 years later ended up exclusively bouldering.

Bouldering – (although I was still way more obsessed with that number than I should have been, meaning I didn’t practice my weaknesses) was a way to escape from that connection. It also took away the harness. Bouldering allowed me to love the sport again and find myself. Through bouldering I found my freedom.  I never thought I’d see myself as a boulderer. I still often catch myself resending a problem and realising I’m climbing like a top roper. But bouldering gave me that freedom when I needed it the most. Strangely I find bouldering a lot more social too!

So now here I am. More in love with the sport than I have been since I was 15/16 and anorexic. And I want to get back on that rope. If I can fund it. It is also an integral part of at least  one of my 2020 climbing goals and maybe a 2nd new goal since realising how much I miss competing.

But I have 2 fears. One is mental health related. Will getting back on a rope suddenly make it feel more serious again and make me take it too seriously and will I as a result, fall out of love. Am I in a place where I will take each day as it comes and not obsess about getting that grade? I think I am. But what if I’m not.

The second is physical health related. Do I have the endurance? What will the payback be like? Now of course I recognise top roping will be easier on my joints than bouldering as no high impact falls or jumps. But what about my ME?

Now of course I don’t know unless I try. And yeah maybe it will be a waste of £9. Maybe the payback will be more than I can hack. Maybe I can’t even top the wall on the easiest of routes. Or maybe it will feel even more like coming home than getting back into the sport 6 weeks ago did.

There’s no way of knowing until I try. So even if I have to diarise it. I will take that leap. And I dare everyone reading this to take a leap too. With anything that has been scaring them but they also know, in their heads and they’re hearts that it’s what they want.

I graduated top of my class… and here’s what I’ve learnt.

 

It feels like it’s been a really long time since I last wrote a post despite only being a couple of weeks.

This is going to be a bit of an odd one but because it A level results day tomorrow, an important one for multiple reasons.

As the title says, I graduated top of my class. An achievement I couldn’t even begin to imagine. Especially because I went into university feeling v out of depth after royally messing up my A2s. I was incredible as an AS student and excelled in law and psychology, also had a bit of a knack for business.

Fast-forward to A2 results day, I achieved C’s and D’s, meaning I ended up with 3B’s. Not that 3Bs is bad. But I was meant to go to a Russell Group. At the time, it was disastrous and to tell you the truth it affected me for far too long.

See, what I didn’t realise then was that grades are not the be all and end all of life. One bad day in that exam hall doesn’t make or break you. Yes it may put a few extra obstacles in the way for certain industries. I know it means I am unlikely to obtain a training contract with a magic circle firm.

BUT NO MATTER WHAT THOSE GRADES YOU CAN BE SUCCESSFULL IN YOUR OWN RIGHT.

And I hope that me graduating top of my class, despite essentially being near the bottom of my class when I entered uni (based on A level grades) shows that.

On a more serious note graduating top of my class and winning a grand total of four academic awards took a lot from me. And I want to let all my fellow perfectionists out there that life is not all about grades and academic awards.

I was in a bizarre position entering third year where my ME was so severe that I couldn’t engage in extra curricular activities due to the amount of walking involved to get to one. Due to the upright time it would require. And I think that pushed me to do so well. Because at the beginning of third year, all I could do was my degree. I could lay in bed and stare at a screen – it was the thing that kept purpose in my life and once I started to improve I was so deep in achieving my goal – to be the best I could be. To get a first that although I allocated more time away from the degree or complete rest purely because I had more hours in the day and was less liable to complete and utter, complete non-functional crashing, it still took a substantial amount of my time.

If I was healthy. I wouldn’t have done that. I would have been more engaged in Drama society, in volunteering or a job and I would have ended up with an average degree.

And that is okay! For three reasons.

  1. There is more to life than grades
  2. Employers value experience more than you being top of your class and winning four academic awards. (Trust me. Yes I have two provisional job offers but no legal work experience or training contract in sight)
  3. MENTAL HEALTH (and physical health) IS MORE IMPORTANT THAN YOUR GRADES.

The third one being in capitals because it is the most important. I am fortunate that my mental health was for the most part positive in my final year of university, my ME improved and I got more of a handle on the suspected endo monster than ever before.  But there was a lot of stress, there were tears. There were stress runs away from my dissertation even though those runs caused excruciating chest pains, felt like dragging my legs through cement whilst they were being weighed down with lead weights and inevitably caused a bedbound day 48 hours later. My sleep pattern was for the most part non-existent until I realised all of my exams were in the morning because ME/CFS sleep issues + pain + stress = han in too much pain to sleep, up until 4am frantically writing and reading about gestational bonding and whether that is a valid argument for the unenforceability of surrogacy arrangements. I partially dislocated joints in every exam, sat one exam whilst on antibiotics and another whilst having a bit of an endo flare.

I did this all because I genuinely wanted it, because I had nothing else, because I’m a workaholic and more importantly I love law. It created a perfect storm.

But just because I did it doesn’t mean you should, or you’ve failed. And I hope this goes to show that one bad academic year doesn’t mean you’re doomed for failure for the rest of your life. I also hope I’ve reminded you that self care is so important and more important than any grade could be.

As a perfectionist that’s difficult to accept, I know. The only reason I’m not doing 24/7 LSAT prep at this point is because I know if my brains not working it won’t be productive. Because However much I want Stanford and however much I am trying to get there, not getting in and not getting the scholarship I require is not the end of the world. The same goes for everything in life. Just because your not the best it doesn’t mean your not enough. Or you’ve failed in some way!

You are enough!