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  • Writer's pictureLucy Harman

Adjusting to a new chapter of life with an illness

Hello everyone, it's been a while!


I haven't posted on my blog in over 2 years now, so where have I been?

Well, University took over my life when I went back in September 2021, I have been FAR busier than I expected I would be, 3rd year was so jam packed with rehearsals and classes that My Crohn’s and Me ended up on the backburner. But now that I have finished, I am ready to get straight back into raising awareness for IBD and helping the Crohn’s community feel proud of their illness.


I am very proud to say that I have graduated from Drama School with a 2:1 in BA (Hons) Musical Theatre Triple Threat. Uni may not have been the experience I wanted or expected it to be, but I have proved to myself that when I put my mind to something, I can achieve anything.


Some photos from my time performing at Drama School in HONK! and Bad Girls the Musical (Photography by Andrew Worsfold & Kasia Kasperkiewicz)

 

Adjusting to a new chapter of life with an illness


I recently moved out of my flat at University and my Boyfriend and I have moved in with my parents whilst we get our ‘adult’ lives sorted and save for a house, and seeing as we are in the middle of a cost of living crisis and the average age of buying your first house is currently 35, it’s looking like we are going to be at home for a while.


I am now adjusting to this next chapter in my life; getting a job and becoming financially independent whilst having an illness, I’ve only ever really been ‘sick’ whilst I was at University, I was diagnosed with Crohn’s Disease in 1st year and somehow didn't defer any years of training, so have only really lived with Crohn’s as a student. So now that I have started a new part of my life for the first time without being in full time education, I am struggling to adjust.


 


Choosing a career path


Having a condition like Crohn’s Disease can make choosing a career path more complicated, my health fluctuates so much and my ability to do things each day changes and cannot be predicted, one minute I am in an awful flare up and bed bound and the next I am living like a normal healthy 21 year old.


It’s important you find a career that won't have a negative impact on your health, eg. something that is too demanding on your body or something that is so stressful you will permanently flare up. I have learnt now that your health is the most important thing to take into account and it must always come first.


It is also highly important to find employers and a team that will be understanding of your illness and what it entails, many people chose to not disclose their health struggles at work, but seeing as when you google my name, 10 different articles come up about my battle with Crohn’s and I run a business all about IBD, I don't really think it would be an option.


Most of my life I have wanted to be a performer and on the stage, and 3 years ago I pursued that dream by starting at Drama School, but recently I decided that right now, the Musical Theatre Industry isn't for me, I credit this to 3 different things.


1. My experience at Drama School


How I was treated at Drama School following my diagnosis by professionals and teachers was riddled with ableism and discrimination. I was made to feel like having a disability put too much of a strain on my training and that I should give up my aspirations as a Musical Theatre performer. Unfortunately I now associate Theatre with that bad experience and I have lost that passion and love for the industry. I hope one day to get that passion back and maybe one day I will be in a place where I feel like I can pursue my childhood dream but currently I don't feel like I could.


2. My Health

Right now, where I am with my Crohn’s Disease, it would not be safe to be performing in 8 shows a week, exhausting my body. After 3 years, I am still nowhere near remission and my test results still remain in the ‘dangerous’ section. I also have a huge surgery in my future to remove my scar tissue and paralysed parts of my Digestive System, it’s a life changing surgery which I have been putting it off whilst at University but now that I have graduated I need to consider getting my body ready to recover from a surgery that big. Therefore, it wouldn't be wise to start a career that relies on energy levels and peak physical health.


3. My fears of the Ableism in the Industry


I believe having a disability in the industry is far more difficult than it should be, Musical Theatre is unrealistically glamorised, we must all look, sound and act in a specific, perfect way, but that’s not real life. I worry I would be treated differently by professionals because of my Crohn’s Disease and I don't know how I would cope with that. I think the Musical Theatre industry is massively behind when it comes to disability inclusivity, especially those with hidden illnesses and chronic conditions and I am not prepared to have to fight constantly just to get treated the same as a healthy person.

 


All of this has resulted in me having to choose a new career path for now, I thought this would be easy, I have 10 GCSEs (B-A**), 3 A-Levels (B-A*) and a Degree, and so you think that I would have many choices of what I want to do with my life, but it’s proving to be much more difficult than I expected.


Since finishing my training a few months ago I have been trying my hardest to get a job, seeing as I have a lot of experience working in social media and have worked professionally with brands I thought that would be a good place to start, I have been getting through rounds and having interviews but for some reason at the final stage always just miss out, I am not sure if that's because they google me and see that I have an illness and spend lot of time in and out of hospital or whether it's because I do not have lots of experience in a full time job or education in that area but it's proving to be a lot harder than I thought. I am a very driven person and am a massive perfectionist and so when things don't go my way I try everything I can to fix it, so in the past few weeks I've gone through about 100 different career paths in my head. But what I need to remember is that I am only 21, I haven't actually graduated yet (I get to put on the funny hat in October) and there is NO pressure for me to chose my lifelong career right now, I can try thing out, see what I enjoy, see what works well with my Crohn’s Disease.


I do love Social Media, and I have had a little taster of what life would be like working in it when I have done brand deals and worked with companies on My Crohn’s and Me, but I am also aware its not the most stable of jobs and sometimes stability is important when I am flaring up. I love Digital Media and content creation, and would love to set up my own business selling online templates to help people organise their lives. Getting to be my own boss would be great with Crohn’s so that's currently what I am working on and am hoping to launch in the coming months.


One thing I know for sure is that I thrive most being creative and being with people and so, no matter how tempting and easy it might be, I don't want to jump into a job where I have to sit at a desk all day doing the same thing day in day out, even though it may pay well and be secure, it would not benefit my mental health.




 


The laws surrounding working with Chronic Illness


One thing that puts me off working for a company is not being sure how the laws work surrounding chronic illness, so I have been researching on the Government website and on Crohn’s and Colitis UK’s website, surrounding Chronic Illnesses in the workplace and this is what I have found:


The Equality Act 2010 is a law that bans unfair treatment (discrimination). The Equality Act stops employers from asking questions about your health, including previous sickness absences, before offering you a job. The law applies to questions on an application form and questions asked during an interview.


  • You do not have to tell your employer about your Crohn’s or Colitis, but it can help you feel more supported at work.

  • If your employer knows about your Crohn’s or Colitis, they can make changes to your workplace to help you do your job. These are called reasonable adjustments.

  • Sickness absence is usually an unplanned period where you do not feel well enough to work. Some workplaces will have a sickness policy, and you may be entitled to sick leave.


Now although there are rules to protect people with disabilities against discrimination, it's clear to me that these laws do not really aid people with unpredictable illnesses like Crohn’s Disease. I don't know when I am going to wake up feeling very unwell, or when I am going to need to go into hospital for medical appointments and with the state that the NHS is in at the moment, I don't have much control over when those will be and I will take any appointment which I can get. (According to the Equality Act There is no legal right for your employer to give you time off for these appointments. They may ask you to make the time up or use your annual leave entitlement.)


For more information about working with Crohn’s or Colitis visit this link:


 

Personal Independence Claim:


If you're in a bad flare up and find yourself unable to work you are entitled to apply for PIP (Personal Independence Claim) PIP is a payment to help with extra living costs if you have a disability or long-term condition and difficulty in doing everyday tasks or getting around because of your condition. (You can get PIP whether you are working or not. It doesn’t depend on income, savings or who you live with.)


This is definitely something that I would be considering whilst I am trying to adjust to life with an illness not at University, and so I would definitely recommend doing this to help with extra costs of having an illness, such as medication.


However, from my own past experiences, applying for PIP can be a difficult process;


My experience with applying for PIP was not great, in 2020 when I was diagnosed my doctors, nurses, consultants and therapist all suggested I apply for PIP to help cover my costs of medication. The application took months to complete and I had to be very vulnerable in explaining the struggles I have living with an illness. I then had an online call and was treated awfully, none of the questions related to Crohn’s Disease whatsoever and after being humiliated in the meeting, I was sent a heart-breaking letter afterwards scoring me a 0 on everything and saying I have no issues at all, am not disabled and am completely healthy. I got this letter when I was in hospital being told by doctors that I couldn't eat for 6 months, had to be isolated from the whole world and that my test results were life threatening so for the government to say there was nothing wrong with me, was disgusting.


I should have complained and taken it to a tribunal to be reviewed but I was so hurt by the letter as a teenager that I decided to just leave it. I am going to reapply soon with the help of professionals who understand the flawed system and can help give me the best changes of my condition being understood


The PIP system is majorly flawed and is not accommodating towards people with long term illnesses whatsoever. People with diagnosed chronic illnesses are called liars and humiliated when trying to access the money they need to cover the cost of being disabled. However, I would still highly recommend people apply for it because you have nothing to lose, I am part of the fight to make PIP applications more inclusive to all illnesses and to “End reviews of PIP and ESA awards for people with lifelong illnesses”.


For more information about claiming PIP with Crohn’s or Colitis visit this website:




 


Who knows where life will take me, I live a pretty hectic and changing life and so maybe in 10 years I will be doing a completely different thing, maybe I will regain my love for performing and be on stage soon. Who knows, but instead of being stressed and scared, I am trying to be excited about all the possibilities and opportunities coming my way.

I am not good at taking my time with things and I always feel the pressure of life, I feel like I am running out of time. When realistically I am only 21, I am still adjusting to life with a long term illness and have my whole life ahead of me.


You are not a failure if you try something out and it doesn't go to plan and you are not a failure if you don't get your dream job straight away. Take your time.

A quote from one of my favourite songs Vienna by Billie Joel



Luce :) X



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