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Balancing university with a chronic illness

Bethany2601Bethany2601 Posts: 11Member Courageous
edited September 2018 in Guest blogs

Hi everyone, my name is Beth, I’m 22 years old and I study social work at university. I love spending time with my family, partner and my dogs. To unwind I like to watch TV and play games on my Xbox! I have an invisible disability whichconsists of chronic pain in my back which travels into different joints in my body. This is something I have had for 11 years now. 

The unpredictable nature of my chronic condition has made balancing university with my health challenging at times. Here are some of my experiences and important balancing tips when walking the tightrope of higher education with a disability:

Be informed

I already knew of my needs when I applied to university which really helped. When choosing the place right for me I looked at my universities disability services, spoke to course leads and looked on student forums to try and know what to expect. University websites provide a lot of information and can signpost you to the right places. This helped me feel prepared about starting on my journey. Being informed also helps me every day when I am at university because when faced with a new challenge I know who to talk to and what further help is available.

Access support

Without support, university would have been very difficult for me. Every time I attend university this support is used. I access things like Disabled Students Allowance (DSA) which has provided me with ergonomic equipment and applications on my laptop. This helps me sit at my desk and write an essay; multiple deadlines can be a killer for chronic pain! Disability services have provided me with extra time in exams and the use of a laptop. A big help for me is my Mentor who I visit every week and helps me balance my stress levels, pain and workload. Furthermore, I always make sure I am honest with my friends, loved ones and lecturers,because that way they can help me even more; I’d be at a loss without them.

Take a break

When it comes to writing my essays or sitting in lecturers, I’ve found it important to take breaks even if I’m not in a vast amount of pain. This prevents my pain getting worse and a rest helps me feel a lot clearer and more prepared for whatever is next! Moving around after sitting down for a while stops any stiffness developing and most universities won’t have a problem with you doing this, especially if it’s part of your care plan.

Know your limits

This is such a big one for me and something I’ve always struggled with. I’ve learnt that pushing myself too much will cause me to have a flare up, this can be things like having multiple meetings and/or lectures in one day AND then doing work at home. This can be too much. Acquiring a positive work/life balance is even more important if you have a disability, it’s giving yourself time to take a break and build up your strength. To do this I plan my week and make sure I have days dedicated to myself, to do things I enjoy. I also chose to live at home and commute because it suits me best, even though many universities offer fantastic support when you choose to live on campus.

Educate

I am at university to better my education, but you can guarantee that your life experience will also educate others. I believe it to be my responsibility to talk about my condition and to help others understand more about chronic and invisible illnesses. The hardest thing I’ve faced at university is the lack of understanding that surrounds some types of disabilities and for example; sometimes feeling judged for using a disabled toilet. Although these are very rare occasions,I believe talking is the best way to combat it. It’s also our responsibility to disclose our medical conditions because that way we can get the best support; this discussion benefits all involved and spreads awareness alongside it.

University is an amazing and worthwhile step to take in your life, and disability should not affect this. It’s not always a piece of cake, whether it be deadlines or a sudden flare up but with the right amount of rest and recuperation; I always pull through!

Beth

If you want to go into higher education and think to yourself “It’ll be impossible for me to manage; from medication to exams to socialising…” Don’t believe that for one second,TALK to universities, TALK to your doctors and TALK to your family/friends. With the right amount of support, you can do anything you put your mind to, disability should NEVER be a barrier. 

Replies

  • Bethany2601Bethany2601 Posts: 11Member Courageous
    If anyone has any questions about starting uni, I don't mind anyone dropping me a messaging or anything! Thanks for reading!  <3 
  • chelseaa_chelseaa_ Posts: 1Member Listener
    You truly are an inspiration Beth! Any chronic illness is horrible and seeing you excel in life through social media is brilliant, can’t wait to see what happens next ☺️ 
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    chelseaa_ said:
    You truly are an inspiration Beth! Any chronic illness is horrible and seeing you excel in life through social media is brilliant, can’t wait to see what happens next ☺️ 
    Thanks Chelsea! Really means a lot to me! You have no idea! 🙈 you're amazing! ❤
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    Our 19 year elder son starts University in September, 

    He has his health, apart from asthma, which he has under contril these days until the spring then the tree sap causes many issues, with hayfever etc..

    My 18 year old niece starts University too next month up in Nottingham, she has severe depression and anxiety and exhaustion, but she sounds like you, determined to carry on, she hardly attended school for GCSE studies, and the same through A levels, yet came out with amazing grades, A's and A* and A' s and B's at A level with two unconditional offers, I may well point her across if she struggles. 

    Your story was wonderful to read, and I'm sure you have educated many of your peers and tutors to disabilities, and clearly you are fighting for your cause. Huge congratulations, you will go far clearly. XX 
    P XX 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    Mumof2ds said:
    Our 19 year elder son starts University in September, 

    He has his health, apart from asthma, which he has under contril these days until the spring then the tree sap causes many issues, with hayfever etc..

    My 18 year old niece starts University too next month up in Nottingham, she has severe depression and anxiety and exhaustion, but she sounds like you, determined to carry on, she hardly attended school for GCSE studies, and the same through A levels, yet came out with amazing grades, A's and A* and A' s and B's at A level with two unconditional offers, I may well point her across if she struggles. 

    Your story was wonderful to read, and I'm sure you have educated many of your peers and tutors to disabilities, and clearly you are fighting for your cause. Huge congratulations, you will go far clearly. XX 
    P XX 
    My mum has severe asthma so I can understand how difficult it can be when things trigger so I wish your son amazing luck on his journey and I'm sure he will do amazing!

    Your nice sounds like wonder woman! She sounds incredibly strong. If she wants to talk about anything I'm always available and don't mind, when I was her age I was also suffering with an eating disorder and other mental health issues so I do understand the strain that can be on your education and confidence. But to have done that well she is amazing. I wish her the best of luck and I'm always here for advice!

    Aw thank you! You have no idea what that means to me, I just want to help as many people as possible to fulfil their dreams as I know how scary this leap can be whether your healthy or not. I wish your family all my love!xx
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    Awwww thank you. 

    Lots of asthma in the family, Mum was a chronic asthmatic, and our younger son has bad asthma, he is 13 now, I had the allergies not the asthma, my husband has mild asthma, and my Father in law has chronic asthma also. 

    Very used to that here! 

    Wishing you every success in the future. Thank you for raising awareness. 
    P XX 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    Mumof2ds said:
    Awwww thank you. 

    Lots of asthma in the family, Mum was a chronic asthmatic, and our younger son has bad asthma, he is 13 now, I had the allergies not the asthma, my husband has mild asthma, and my Father in law has chronic asthma also. 

    Very used to that here! 

    Wishing you every success in the future. Thank you for raising awareness. 
    P XX 
    Asthma is very difficult to manage sometimes but glad you all seem to be doing really well ❤

    Thank you so much and all the best for your family ❤❤
    Beth xx
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    Hi again. 

    Not sure what inhaler your Mum is on, but powder inhaler ( Turbohaler) Symbicort - has been an amazing thing for both our sons, two years ago. It's all but cut out Ventolin blue and Clenil beige and brown, our youngest now sleeps through ( previously up 4 times per night, and no more hospital nebuliser scares, well for now anyhow) still keep steroids and have a home nebuliser incase) old habits die hard! But not needed to use them. XX P X 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    Mumof2ds said:
    Hi again. 

    Not sure what inhaler your Mum is on, but powder inhaler ( Turbohaler) Symbicort - has been an amazing thing for both our sons, two years ago. It's all but cut out Ventolin blue and Clenil beige and brown, our youngest now sleeps through ( previously up 4 times per night, and no more hospital nebuliser scares, well for now anyhow) still keep steroids and have a home nebuliser incase) old habits die hard! But not needed to use them. XX P X 
    Hi!
    She takes that one, she's on all of them except the beige and brown and currently going for injections as it's been affecting her heart in the last year sadly, but I am hoping that this helps her!

    I'm glad that your sons are doing well! I'm not surprised the nebuliser scares him as it is loud!! It's great when meds start working right so I am happy for you all!!

    B xxxx
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    Hi @Bethany2601

    Awe my Mum had injections for her asthma, as she used to accidentally OD on puffer inhalers. That was 40 years ago though. 

    Powder inhalers so far, have been an absolute god send to us, as a family. 

    Good luck with everything. XX Pip xx
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    Mumof2ds said:
    Hi @Bethany2601

    Awe my Mum had injections for her asthma, as she used to accidentally OD on puffer inhalers. That was 40 years ago though. 

    Powder inhalers so far, have been an absolute god send to us, as a family. 

    Good luck with everything. XX Pip xx
    You too lovely and thanks for all the kind words 

    Beth xxxx
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    @Bethany2601 you too. 

    Wishing you all the best of luck in the future. Thank you for such an inspiring post. XX 

    Pip x
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • painterpainter Posts: 42Member Courageous
    Well done Beth, what an inspiration.  My disabled son is doing an OU degree course at present, just about to start his second year.  I do worry about him being isolated, he lives with me and his step dad. I am his main carer even though i am disabled and unable to work.  I am very proud of him doing this course.  He had a massive brain stem haemorrhage when he was 33 and this has left him with no feeling at all down his right side from top of head to his toes, he walks which is amazing, albeit slowly and with a sort of lurch.  Unable to hold things in his right hand, drops things all the time because he cannot feel anything.
    I am hoping that after his second year he may be able to apply to our local university to continue his history degree.  As you say he could contact the disability people at uni and also DSA.  DSA did buy him his touch screen computer.  We live in a small village outside the city and feel he would meet more people out in the big wide world.
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    Mumof2ds said:
    @Bethany2601 you too. 

    Wishing you all the best of luck in the future. Thank you for such an inspiring post. XX 

    Mumof2ds said:
    @Bethany2601 you too. 

    Wishing you all the best of luck in the future. Thank you for such an inspiring post. XX 

    Pip x
    Wish the same for you and all your family!xxx
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    @painter that means a lot to me, really does.

    I wish him the best of luck with his second year! I'm also going into mine! If he feels isolated there's student forums or this forum which may make him feel less so or the OU may have something also. I also know the OU are working on things to be more inclusive! 

    DSA can also arrange transport to help your son attend university and the universities have so much support available and want to help. So definitely contact them, they will personalise any care he may need too. 

    I wish him so much luck, he sounds like an amazing guy whose incredibly strong by what he's been through and I'm sure he can do anything he puts his mind to. You're also amazing caring for him as well as yourself. Take a strong person. Xxxx
  • veritercveriterc Posts: 159Community champion Pioneering
    Bethany
    Loved reading your post, which is full of practical and sensible info.  I have a tip re toilets!  My disabilities vary from day-to-day, but I do need to know there are aids available in case of emergency, so if I use one on a 'good' day I make sure I limp badly when coming out - so avoiding glares!  Sneaky but self-preserving!  I had polio, but found when studying that Uni swimming pool was marvellous in providing exercise that really helped with pain - I write about benefits of hydrotherapy on aftercancers.com.  Also, as a beauty journalist I write about skincare on aftercancers.com, in particular about the way that pain killers and other drugs can play havoc with our face/skin - and what helps.  Good luck.
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    @veriterc sorry I have took so long to reply!

    Thank you so much, I really appreciate it! That's a good tip for toilets! I don't use them all the time but I do on bad days or when I need to connect my TENS machine! Definitely a self preserving idea.  I love anything to do with water and will have to take a look at your work at some point!

    Thanks again!
  • veritercveriterc Posts: 159Community champion Pioneering
    Bethany
    You'll probably find back stroke is best for back pain - reaching behind srengthens muscles along spine.  I wouldn't advise butterfly though !  
  • Bethany2601Bethany2601 Posts: 11Member Courageous
    @veriterc thank you very much!😄😄
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    Thanks for sharing your link @veriterc :)
    Scope
    Senior online community officer
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