Talking to able-bodied people about disabilities

Hi everyone, I’m new here!

I‘ve just turned 22 and every birthday is hard because 2 days before my 16th birthday I was diagnosed with JI Arthritis and fibromyalgia. My grandmother has RA and my pain is moderate-severe so I assume I’ll have this for the rest of my life. My neck , hands and knees are the worst. Neck is unbearable.

From 16-20 I didn’t accept this disease. I didn’t acknowledge it, I feared methotrexate and still do. Im sure I’ve developed a phobia of medication because in 2015 I ended up in hospital severely unwell with a viral infection and had no white blood cells left because I was given more methotrexate than my body could handle. I’m currently not taking it but I know I need to eventually (sooner than later)

I’ve struggled with my mental health since I was 13 but the diagnosis has pushed me near to the edge countless times. I still can’t process that I will feel like this for the rest of my living days. I’ve started to read some peoples posts on here and whilst I can relate, I still can’t find peace with it all. It’s been 6 years and I’ve only started talking, admitting and researching this disease in the last 2. My in-denial and hatred for my diagnosis has been a serious problem because it effects me in multiple ways. I don’t feel sorry for myself or look for pity, but I believe that not having any friends or people my age that I can relate to has not only ruined my self esteem but also makes me feel isolated and stressed.

I have never had a conversation with anyone who has arthritis other than my Nan. That’s how isolated I have made myself and therefore am generally only surrounded by able-bodied people who unfortunately, share their ignorance through their words and actions towards people like us.

But it is undoubtedly hard to not feel like the universe is taking you for a ride when you feel like a crippled 90 year old in a 20 year olds body who looks like she could go gym 6 days a week. I find that being a woman also makes this journey worse because society already seems to believe we don’t feel as much pain as men, that we are hypochondriacs and the way we react to a bee-sting should be of the same reaction as chronic pain that we feel 24/7. Before 2 years ago I wouldn’t speak to able-bodied people about disabilities because their response was too upsetting for me to hear. I find that I get quite bitter or unbothered when someone is telling me how bad their life is when they are wealthy, healthy and are theoretically the root of their own issues. I find it hard to connect with people but it’s because all of these people I’m talking to are ABLE-BODIED!

Comments

  • chloeday
    chloeday Member Posts: 6

    Wanted to post this to see if anyone else can relate to these feelings and how you over come them. And to connect with other young people who struggle with chronic pain ❤️

  • Aj_x
    Aj_x Moderator Posts: 176

    Afternoon @chloeday

    Firstly, I would like to Welcome you to The Online Community Forum. Coming here and writing this post is the hardest step but the first step to admitting you have JI Arthritis and Fibromyalgia.

    There are some links I can attach for you to read which might help you to understand it more as well.

    Fibromyalgia | Causes, symptoms, treatment | Versus Arthritis

    Are you speaking to anyone regarding your mental health? I will also attach the Helpline Number so you are able to speak to some if you wish to. Helpline 0800 5200 520

    There are many Forums for you to take a look at, and remember that anyone you speak to we all have some sort of arthritis. I must admit some might be carers so they know what you are going through.

    There is a member that I would like you to contact. Her name on here is @Fruitbat1981. She also had trouble accepting her illness and spoke to no one until she found this forum.

    Please have a look around at the other forums. You might find that there are other members that have the same condition as you or even that you find that you can speak to about how you are feeling etc.

    I would like you to remember that being a member of the Online Community Forum, you are now a member of our Family.

    Stay Safe

    AJ_x

  • chloeday
    chloeday Member Posts: 6

    @Aj_x thank you so much, i will be sure to do those things. The hardest step is talking to others but once we do that it gets a little easier ❤️

  • Mike1
    Mike1 Member Posts: 1,455
    edited 5. Mar 2021, 14:49

    You are undoubtedly an intelligent and articulate young lady, I regret that being old enough to be your Grandfather I cannot relate to how you feel but I perfectly understand having gone from a very fit bloke to a wheelchair user. Unfortunately people tend not to understand disability unless it is something that they can see, there are a few people of your age on here so I am sure that they will be in touch. Once the pandemic is under control local Arthritis groups will be able to start up again so check out to see if there is one near you.

  • Lilymary
    Lilymary Member Posts: 1,038

    Hi @chloeday , what a hard road you've been travelling. Wish I could give you a hug. I'm 61, but have been very fit all my life and hang out with very outdoors-y people, and since my hip packed up (a lightweight problem compared to yours) I haven't been able to do any of my usual outdoor activities, and am struggling to work or even do day to day social/domestic stuff. I see my friends posting pics on social media of all the exciting stuff they've been doing, and all I can do is sit on the sofa or a bit of light gardening. This means once lockdown is over I'm excluded from all the things we used to do together. My husband goes running or cycling most days, it's all I can do to hobble slowly to the post box. I find it hard to look at their posts sometimes, and hard to be happy for the great time they're having, but I know that's mean spirited of me and try not to think like that.

    I agree, it's hard for fit and healthy people to understand how constant pain feels, and how exhausting and limiting it is. I'm sorry you've had to deal with a constant tidal wave of misunderstanding or indifference. That must be really hurtful. Try calling the Versus Arthritis help line if you want to speak to a real human who knows how this feels.

    We do have younger people posting on here quite often, so keep an eye out for their posts so you can share your experiences. But even us "old f*rts" find this condition pretty pants and are fed up with how it affects us, so if you just want a general moan, we are non-ageist! Some have been dealing with it for a lifetime like you, but being a bit further down the line, they may have some useful tips for you. There are also some local support groups, so you might find one of them helpful.

    It may also be worth seeking some counseling, such as CBT (cognitive behavioural therapy) which may help you deal with your self-image, and coping with other people's perceptions, as well as your general mental health, so do look into that as well. Seeking help is a sign of strength, not weakness.

    I'm sorry you're having to deal with this so early in your life, but you don't have to do it entirely on your own. Many others have similar struggles, we just don't bump into each other in the normal course of events.

    Take care x

  • chloeday
    chloeday Member Posts: 6

    Thank you @Mike1 and @Lilymary

    it doesn’t matter what age you are this condition effects all of us and our livelihoods! Being young doesn’t help because you are just navigating your way into life and coping with lots of other things but I will grow old one day too and still have this. Thank you for your kind words and encouragement I hope I can look to the future positively instead of how I currently view it! I think sometimes .. we just can’t be bothered for it! X

  • stickywicket
    stickywicket Member Posts: 26,104

    Chloe, I don't come on here often now because the pandemic has increased my workload a lot but I've read and re-read your post umpteen times mainly because I feel I ought to be able to relate to it (I, too, was diagnosed at 15) but, on the whole, I can't.

    I shall be 75 later this month and I've had a good life. Pain, of course. Meds by the bucketful. Operations and replacements, yes. But a good life nonetheless with tons of love, laughter and fun. What more is there to life?

    I recall:

    friends helping me to walk to school

    having to learn to write left-handed for preparation work to save my right for for the fair copy

    someone having to write for me in my final exams

    carrying a heavy bag to and from work

    hardest of all, the years when my sons were little and I was at my worst. I terrified my mother-in-law😄

    No-one understands properly someone else's illness, disease or pain. But that's OK. We can help them understand what they want to know and ask for help when we need it. Not too often as no-one seeks the company of a professional moaner. But arthritis teaches many valuable lessons. We DO learn who our real friends are, what our real values are and how wonderfully kind total strangers can be.

    Arthritis really doesn't have to equate with a second rate life. I've had to give up many things that I loved because of it but I've ensured that I always took up something new to replace that which was lost and that's meant some really interesting paths that I'd never, otherwise, have gone down.

    All I can suggest to you is to take the DMARDS, never miss a blood test, always do any prescribed exercises, work hard at your job, find fun stuff you can do and fun people who don't care about your arthritis because they like you for other things. Arthritis is a very boring topic of conversation for us and for them. Never concentrate on pain. Distraction, distraction, distraction. When things go wrong just ride it: they'll improve again. And good luck!

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Lilymary
    Lilymary Member Posts: 1,038

    Brilliant advice @stickywicket , since I joined a year ago your advice has been so helpful. Xx

  • chloeday
    chloeday Member Posts: 6

    Thank you for your message. It’s inspiring that you can relate and have many years experience of this. I know it’s all about learning these coping mechanisms over time and taking responsibility for the disease but at a time in my life where I need to have the energy to start my life up and get things going, in a time where money and opportunities are sparse as it is, and then having this holding me back whilst I have lots of ambition is disheartening I think for anyone let alone a young person. I hope to gain a stronger mentality about it all soon. I hope that you are feeling better in yourself during these difficult times xxx

  • frogmorton
    frogmorton Member Posts: 26,485

    Hi @chloeday

    You've had some great advice and stories to read Chloe. Initially I thought I had nothing to add, but your age resonates with me. Not because I am a young person with Arthritis - l was lucky enough to be a good bit older than you before my own diagnosis. But my own daughter, 3 weeks after her 16th birthday, was diagnosed with leukaemia and the treatment (2.5 years of chemo) resulted in Avascular necrosis Lt hip Rt shoulder and thigh bone. She had surgery on her hip at 18 and a new shoulder joint at 19 and now has tonic clonic seizures too.

    Friends. Friends are what she lost. A chance to be a 'normal' teenager and have boyfriends, drink too much and be irresponsible.

    This is a tough path you find yourself on. You have every right to be angry I think my Lucy did anger, but mostly denial because she did try all the silly stuff she drank way too much and I can't tell you the number of times I went on dashes to various hospitals because she had a seizure as a result. Then she decided to stretch her wings, (probably partly to get away from me having had to spent 3-4 years being looked after !), and went all the way up to Scotland for a year or so and started a college course up there alongside a part time job. Then COVID struck and she needed to be inside.

    This pandemic has affected everyone in the world, but I genuinely feel it has and will damage the young the most in the medium term. Job opportunities are sparse, but I am hoping that they will improve once things are under control out of the ashes new things will spring up. My daughter is back here and had her vaccine now and actually enjoying being with her family - not that she can see most of them! I think and hope she has worked through a lot of her anger at the hand she has been dealt.

    I don't know what to say to help really, but think grieving and allowing yourself to grieve for the life you deserved has to be part of it. Getting through the anger and resentment that other people have what looks like an easier life too.

    My own experience with arthritis is that getting informed and talking (to those who understand - that's us lot and not necessarily so much our loved ones) helps - a lot.

    Take care

    (and @stickywicket hello!!!!)

    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,104

    It's great that you have ambitions, Chloe. That's something to focus on. In your shoes I'd be listing my ambitions in order of importance/ realism. (I doubt either of us will ever be Olympic pole vaulters😉)

    Next, work out the steps you need to take to achieve the easiest ambition. Things are opening up a bit more now so qualifications and courses should be getting easier.

    I'd suggest that, whatever it is you really wish to do, you must start by making an appointment with the rheumatologist and getting back on DMARDS. While the disease is making you so tired and in so much pain that has to be the first step out of this morass you find yourself in. Without DMARDS we just give the disease our full permission to do what it wants. And it will. DMARDS are no magic potion but they do hold it back and prevent its most damaging effects.

    Taking small steps does give us the confidence, and pride in ourselves, to take bigger ones.

    Thank you for asking, I'm fine. The pandemic has merely increased my workload. I never got out much beforehand though I do miss being unable to visit my son and grandson in Los Angeles this year. Normal service will, hopefully, soon be resumed😀

    @Lilymary - thank you for those kind words. At the risk of this degenerating into the mutual appreciation society, I always think your comments are kind and sensible, too. FYI after my husband was told he'd be waiting at least another 17 months for his new hip (It's now about 18 months since he was told he needed one) we have decided a hip is more important than a conservatory, our sons are determined to chip in with money and it will now be done privately, against all his principles, poor man!, May/June. Could you do the same?

    @frogmorton - 👍️😊 Lovely to see you. I'm off again now!

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Sharon_K
    Sharon_K Administrator Posts: 269

    Hi @chloeday

    welcome to the community and thank you for sharing your experience with us. I know that our members are amazing here and will be able to share lots of useful ideas with you and will be able to support you too but I also thought you might like to visit a site which is aimed at your age group. It's called Arthurs place

    They also have a closed Facebook group you might like to join. Let us know how you get on and how we can support you

    Best Wishes

    Sharon

  • Bic1982
    Bic1982 Member Posts: 10

    Hi @chloeday

    I wanted to say hello and to thank you for sharing. You've been really brave in sharing how you feel on here and I think its really commendable. You sound like you have really struggled since being diagnosed and I can relate in what you have shared so much.

    I was 2 and a half when I was first diagnosed with Rheumatoid Arthritis and spend much of my early childhood in and out of hospital, Dr's appointments, physio and school to the point that I was very shy and nervous around kids my own age. This wasn't helped by being bullied for the way I walked but I was lucky that I had my brother, who is only 16 months older than me. Without him, I would have felt very isolated. When I was older, and at secondary school I was still in and out of lessons regularly and I felt that no body really understood what I was going through. I had a small group of friends but they couldn't really grasp what it was like to be in pain all the time or why I had so much time off and even why the school had to have different aids and systems in place for me. Trying to explain to teenagers why you cant go on a school trip or why your not allowed to do P.E without coming across like a 'freak' was not easy. I feel like, looking back, it has definitely made more of an impact on my mental health and self esteem the older I have gotten.

    Even now, trying to explain to family member or friends how it feels is still hard. People often assume once you've had surgery then the problem goes away, but that isn't always the case. I can also relate to feeling bitter at times, but i think that is fair enough. We cant always feel great, we cant always be optimistic or rational. Sometimes we need to sit down and have a cry and wonder 'why me'. Its a perfectly legitimate feeling to have and you shouldn't feel guilty for feeling that way.

    I can tell you though that it does get easier, with time. Don't be so hard on yourself. So what if its been 6 years since you were diagnosed. You have to deal with it in your own time. Its alright to feel rubbish about things every year too. There is no right or wrong way to feel. We all deal with it differently.

    Just know that you are never on your own. We may not be able to meet up with you but we are all here to listen and talk to you if you need anything. Even if its just a rant about a particularly rubbish day, we are here!

    Please feel free to get in touch directly if you would like.

    Take care

    Anne x

  • SPN97
    SPN97 Member Posts: 14

    I have no idea how this works but I'm going to try my hardest to come on here everyday t get to grips with it.

    Just reading through the comments has made me feel slightly better.

    it must be said that I'm particularly taken by the way @chloeday articulates the experience of being: 1. Young and 2. Surrounded by 'WELL-PEOPLE'.

    I'm 24 and find that the hardest thing is that people aren't willing to let you be angry about your situation? There's always a clever 'mindfulness trick' or 'coping mechanism'. I really didn't consider the fact that suffering from chronic pain I'd also have to be unemotional about it?

    Apologies if my tone is off, or seemingly negative, am struggling with the positive atm.

  • Chris_R
    Chris_R Moderator Posts: 303

    Hi @SPN97

    Welcome to the online community,great to see you speaking to others already.

    You dont say what type of Arthritis you have it would be good if you could it will help others to help you.You dont seem negative to me just wanting answers which is all we all want,its great that you have found comments helpful already.

    Please let us know how you get on and keep on chatting to the forum it often helps especially if you feel comfortable.

    All the best Christine

  • SPN97
    SPN97 Member Posts: 14

    I have OA in my left knee and ankle. I am also hypermobile and believe this must have an impact?

    Could do with some advice on how best to use this really...

    I just want to feel a connection with people again, it's been so long since I've met anyone who actually understands why I am the way I am due to pain !

    Thank you for the introdution too, so friendly on here so far, thank you thank you @Chris_R x

  • BRUCE3662
    BRUCE3662 Member Posts: 4

     @chloeday, @Aj_x,  @Mike1@Lilymary,  @stickywicket, @frogmorton, @SPN97, @Chris_R, @Bic1982, @Sharon_K,

    I am new here and just wanted to say hi and thank you!

    In reading your conversations, I sensed a healing has taken place. I heard a washing away of bitterness and criticism; and a cleansing of feelings of being unloved; and a trust in moving in new positive directions. What an amazing example of a loving community!

    Peace and blessings,

    Bruce

  • Lilymary
    Lilymary Member Posts: 1,038

    Hi @BRUCE3662, and welcome - this really is a special forum. The lovely people on here have certainly kept me afloat for the last 15 horrible months. Hope we can do the same for you, if you need it. x

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