I need to accept I am disabled

[LST]

I am almost 30. I have rheumatoid arthritis. My body for the past 15 years acts like I should be at least 80, and to be honest with you, my nan is in her 80s and she is in a better physical state than me. I have always tried to 'get on with it' but recently, especially with not getting out during lockdown, I have had to accept I just cannot do what others can and will never be able to. I've never considered myself as disabled. I know it's nothing to be ashamed of, but, I've never wanted to accept that I was. But I am. And it had made me so low. I can't really talk to anyone in rl. I can't open up properly. I'm always the lighthearted one that doesn't let anything get her down.

I seem ok. People see me and see my slight limp and how I hold myself a bit awkward. How I don't open doors or hold things properly but that's about the limit. The grimaces I make when I stand sometimes I hide pretty well. But that isn't me. Inside I sometimes scream. Scream it's not fair or just scream in agony. Not being able to squeeze toothpaste out of a tube in a morning or get my pjs off to change into clothes. That's me. A daily struggle I try and hide. I hide it from everyone. I don't want to seem weak. But in body I am, even if I try not to be in mind.
I was diagnosed at 16. I have been fighting this losing battle ever since. 14 long years. I look forward to needles in my knees, draining fluid that is not meant to be there and replacing it with steroids that give me a few weeks sometimes months if I am lucky, of slight relief. A hip that is no longer the one I was born with because my body destroyed the original. There are some worse off than me and I am so thankful for the support I have around me. My boys keep me going even though it hurts my heart when they ask if they are allowed to hold my hand, or if they can't because that's my poorly arm. Not being able to make their beds or get on the floor and play with them. Picking them up has been forgotten, they'd never ask me now.
The NHS has been a constant rock. One that never has given up on me, one I've relied on for 13 years. I can call them and see a consultant normally the next day for pain management. I don't know what I'd do without it.
I don't know why I'm sharing this. It's not for attention, but I suppose to show that what you see isn't always the full story. Not just me but everyone. Be it physical or mental health. Most of us put on a front to the world so others don't see the real thing.

Sorry. That is so long. Sorry.

Hi, I was also diagnosed as a baby, I have a form of cerebral palsy called hemiplegia. Some people spot my 'wobbliness' straight away, others see surprised. As I've grown older and the science improves I've discovered it comes with lots of less visible stuff too - these are the bits I'm more often found explaining.

Like some PP, I think it's different as I don't have a time 'before' I had my impairment. This is my 'norm'. I do definitely hear you on the frustrations of having to ask for help and accept that there are some limits to what I can do. I especially worry about the affect of this on DH. In lockdown, being classed as 'high risk' has certainly made me feel more 'vulnerable' than I usually do.

Sending solidarity and cake!

I feel the same. I also have rheumatoid arthritis. I find a fair few people don't get it. They will suggest I go out for a nice walk or want to do things two days in a row. I have accepted now that if I do anything one day, the next day is a write off and have also had to go part time at work as otherwise I have to lie in bed all weekend to recover.

I am always in pain and my meds aren't working. Tried sulfasalazine, had awful side effects with methotrexate and soon I am being put on my last option with the NHS.

I am also tired of having what is often an invisible disability. I have frequently been told I shouldn't sit in the disabled seats or told off for using the lift. I think once this is all over I am finally going to get a walking stick.

Often it’s harder simply ‘pretending to be ok’ or trying to explain it to others that is the hardest part, isn’t it?

Funnily enough I actually posted on the FB page of my condition recently about this very issue, OP and how certain people in my life are ignorant to the physical and emotional pain we have to tolerate on a minute-by-minute basis.

Even Mumsnet doesn’t have a CHRONIC pain section 🙄🙄

The vase one makes me laugh every time.

I’m also surprised there’s no Disabled Parents or similar topic @ClassicCar

Or ‘limited mobility’ as I like to call it on my bad days

I hear you OP. It's a bloody hard thing to admit, but you will feel better for it, I promise.

It took me well over a decade to accept that I am disabled. And two (separately) broken bones before I'd use a stick. Stupidly pig-headed.

However, since I have, my life has got better. Really. I needed to admit it in order to grieve for the life that I was expecting, the life that still, with just the right treatment, luck, voodoo, whatever seemed tantalisingly possible but never actually materialised because my condition is both incurable and degenerative (albeit with a normal life span).

There are some upsides - I won't be having a midlife crisis because, you know, I've already dealt with the whole 'It's all downhill from here and I'm invisible to the general public' angst. I give the energy and time to the people and things that I care about. I don't sweat the small stuff. My children will never say I put my career before them, nor will they be overburdened with huge wealth

Oh, and if you haven't seen this, you may find it resonates:

asone.nass.co.uk/the-gorilla-in-your-house/

It's light-hearted but there's a serious point behind it. It helped me to be a bit less pig-headed, anyhow.

Oh my God. Thank you all so much for your replies. I am in tears. With all your kindness and understanding. I always feel so alone and to know that there are people out there going through the same shit. It makes me sad that you all have to carry this around with you like I do though. I wish we could just wake up one day and we could be ok. Just for that one day.

@PerkingFaintly wow! That just floored me. What a brilliant way to look at it. I am a disabled person that can still do a lot. Thank you for that. I have never looked at myself in that light. I have always seen myself as failing and being 'unable'

You're all brilliant

Disabilities come in many shapes and sizes, some long term some short term, some get worse some get better. You know that you are not on your own. Arthritis is one o those things which I think can be belittled and undervalued.

@BatSegundo I love the gorilla analogy!

@LST, so glad you're feeling more supported. I don't know if you've heard of spoon theory? I use it a lot to explain how I'm feeling: butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Have you been offered any of the infliximab type drugs? My auntie has it and she has a monthly infusion, as I did for my MS. They are life changing.

I totally sympathise. I’ve got degenerative discs, fibro and have had a brain injury. It’s taken me an incredibly long time to come to terms with things I can’t do and I get so angry and frustrated that my life is so fucking shit compared to how I used to live. I’ve just had a blood test back showing my white blood cells are hugely raised, so waiting to see haematology for that. I suspect RA as my wrists and ankles have taken to swelling up, and I’m hurting more than normal, but I’m worrying myself stupid over it. I’m very good at pretending I’m ok and I can manage, but really I’m not and I can’t. It’s crap.

i’m 47 with Psoriatic Arthritis. it has taken lockdown for me to have time to reflect and accept that this is me, i am disabled.

i was diagnosed 4 years ago. i take methotrexate and wear a buprenorphine patch for pain, and take Pregablin.

i’ve just been awarded Higher Rate mobility for my PIP. i also get higher rate care. my mental health is also laughably poor. i am on 19 different meds. my car broke down before Xmas and i have been housebound since then. i’m shielding at the moment, but looking to get a Motability car once the scheme reopens. i have a blue badge. i need crutches to walk, and i can’t walk far at all.

i’ve fought this every step of the way. i don’t want to be this broken, pointless person. my siblings are all in good health, i’m the only one of 4 with any health problems.

but, this is me now. i’m not who i was before i had a complete breakdown in 2012. my physical health has deteriorated dramatically. my thyroid needs removing but i’m not in good enough shape physically for the surgery.

OP, i completely understand how you feel. i live with chronic pain, and people who don’t live with chronic pain have no idea how debilitating and depressing it can be. my back is currently so bad that i struggle to brush my teeth standing up.

it’s a case of mental adjustment, i think. i have found it very hard and i’m sorry that you’ve struggled too.

I can't even begin to know how you feel. I have osteoarthritis and at times not that's bad enough. I was actually relieved that I didn't end up with a diagnosis of rheumatoid.
Have you thought about joining a support group where you can talk to others who understand what you are going through? I know when I've been finding something really hard, being able to talk to someone who understands has been really helpful.

I hear you @LST! I’m 47 and have Psoriatic Arthritis, Osteo-Arthritis and Fibromyalgia. I was diagnosed 13 years ago, 12 weeks after I had my DS, the hospital told me it was pregnancy/giving birth that triggered it.

I was hardly able to lift him up when he was a baby, I had to come downstairs on my bum, DH had to get me out of bed and help me dress.

I’ve had various meds over the years, pretty much every biologic on the market and I get relief for a month or two and then it flares again. My right knee is currently the size of a water melon and needs draining but I hate having that done, it knocks me sick!

I had to finally give up work in 2014 as I just couldn’t cope any longer, I applied for PIP and was awarded Higher Rate for both indefinitely and put straight in the Support Group for ESA. Luckily DH has a very good job so we manage money wise.

DS often asks if it’s his fault I’m sick and if I’d known I’d be ill would I still have had him, which really upsets me.

DH and DS are amazing and are so supportive and helpful, DH does pretty much everything and often comes home to me being curled up on the sofa in my pyjamas.

It’s a rubbish existence at times but my boys get me through it.

It’s crap but most of the time I’m ok with it. But not today. I’ve had a bit of a cry & come to bed. The pain the last few days has been excruciating & I think it’s the weather.

I’m not eligible for biologics due to other health conditions but take hydroxychloroquine & leflunomide. Mtx did nothing. Never ever going back on steroids. I don’t know what to say to you. I got diagnosed about 16/17 years ago after 2 decades of going back & forth & being told I needed to exercise more & that I had a low pain threshold. It took miscarriages to get me referred & to start on the long line of investigations. I now have a great team & fab GP. I’m lucky that my family & dh are very supportive. Sil used to come out with the odd comment but has got better over the years as I’ve realised I need to say when I’m not great rather than struggling through.

Silver lining - blue badge, first on the plane so no fighting for overhead locker & wheelchair through security

I was diagnosed 7 years ago I’m now 33. My hands are the worst both my middle fingers now have what they call a swan neck deformity, I have splints but they are so painful I cannot wear them. I’m currently on sulfasalazine, hydroxychloroquine and metoject they aren’t even touching the sides so I’m also taking steroids which is helping a little. I was meant to be starting biologics but with the virus I have to wait! I hate it, I’m in constant pain but I hate having to ask for help.

It took me and my two dds a long time to admit they are disabled. It's a big thing to do imo.
My yd has JIA and other conditions since she was 9 and my ed has CRPS since she was about 12.

My condition (chronic severe eczema) is different than many posters here and the OP and certainly less impactful on my life than rheumatoid arthritis.

Following from my previous post I do see some parallels though - certainly in the use of steroids!!!

Most of all what strikes me is how much effort it takes to be "relatively well" (or fake it) that most healthy people don't understand.

I've alluded in my earlier post about the skincare routines I have to abide by and how time/effort consuming they are (plus the practicality of being able to do it).

That every day you make decisions governed by the state of your condition - it is like a prison.

When you are well (in my case) people think you are silly not to go swimming for example and golly I'd love to!!! But I know the chlorine strength in a public pool will see me flare for weeks.

I think what I find so frustrating is that I'd love the idea of my condition not being a factor in every bloody decision I make.

I don't think healthy people understand how invasive it is as even if you are as "well" as you can be is because the massive effort involved as the result of major medical and lifestyle interventions that can be undone very easily.

It’s also a very difficult thing to accept you are disabled. It took me years I think. There are still some days when I get angry but that won’t achieve much apart from making me feel sorry for myself. I try to look at the positives. No congestion charge, a seat (usually) on the tube.

I’ve struggled with lockdown as I think the disabled were forgotten for priority slots. Obviously had to give up my cleaner who came twice a week so that on top of trying to do shop. Luckily Tesco eventually came to my rescue with priority slots.

But I definitely think people don’t know what it’s like to be disabled. A friend broke her leg & she said only then did she get a glimpse of my life. Things like having to plan your journey to avoid steps or how far to walk. But she was better in a few months, mine is for life.

Sorry in the midst of a flare so feeling very sorry for myself!

@BarbedBloom
I highly recommend getting a cool walking stick, even if you don't need it for leaning on - as a magic talisman to make people give you a bit of space, offer seats, and generally be helpful, it's great.

Also for herding kids in the right direction and hooking bags off the floor.

Worst for me has been applying for PIP (I never managed to fill the huge long form in in time for DLA), and the gruelling assessments, even though I've been treated politely and awarded what I should get (possibly thanks to me and DH introducing ourselves as Dr... not medical but they don't need to know that).

Yes to a walking stick. I have several. I’m also very good at
Waving it in front of me on public transport to get a seat
Waving it in front of me so I get on/off the train without people bumping into me
Stamping it on the floor if I don’t get a seat.

It’s not as aggressive as it sounds [grins]

I'm getting better at claiming what I need.

Conversation standing up - I say "I'm going to sit down now"
Queue at theatre - I've got myself a special card I can use to get to the front of the queue. (Don't go do often though as need best seats in house so I don't have to turn my body or neck at all - expensive!)
Standing on train - Another special card which I can use
Work trips - Lots of adjustments, business class flights etc. to help make it, not comfortable as that's impossible, but get me out there in a state where I can do what's needed, and I crash for weeks when I get home.

I hate being the awkward person always asking for stuff, but it does help manage the pain. DH still struggles with accepting this isn't going to massively improve. I do everything I possibly can to keep myself in a good state, and once I'd sort of accepted that I was "disabled" I was able to be a bit more bolshy about asking for what was needed.

Yes I use aggressive crutch manoeuvres too! My physio recommended taking it on trips. Normally I'd only use if I as having a bad patch, but physio pointed out it can also be used to avoid having a bad patch in the first place. I look young and normal except on the worst days, and having an obvious disability aid gives me more confidence to claim what I need. I don't want to have to go into my health details with every one in a train carriage, to justify why I need a seat. But the crutch helps.