To be so fucking angry about what my illness has done to my life.

[LondonLady1980]

I hate what my Disability has done to my life.

I grieve for the life I used to l have, I feel so unhappy about the life I currently have because of all the ways my condition affects me and I feel so hopeless about the future.

Chronic conditions are so cruel because I know I can never be cured….. and the fact it’s a hidden disability just makes it even worse because people have no idea how my life and mental health is affected every day. It’s so isolating and exhausting.

I wish I had a punch bag as I am so full of anger and rage and frustration.

Is anyone else in the same boat? I need somebody to be angry with, and who wants to have a rant, scream and swear with me, because I’m so sick of hearing fucking platitudes from people all the time.

My dd has a chronic condition and is infuriated by the - hope you well soon/ feel better soon comments.

I have M.E & Fibro. Was long haul cabin crew for 14yrs and had to give it up because I couldn't handle it. I now have to have a shower sat on a chair, a hand rail at the side of my toilet, a seat to sit on whilst i cook or load the washing machine. A simple trip to tesco leaves me needing a 3hr nap.
I used to walk for miles and miles, hiking with my dogs. Now, i get exhausted simply just washing my hair and can only walk a short distance before I feel like am about to fall down. It has made me so bitter and angry. I am 40 yet feel 80.
I feel you op I really, really do 💐

Something has had a pop at my legs and back, just as I am approaching my 60s. I haven't had a pain-free day in 3 years and, although now its just very uncomfortable, I know I will be like this until the day I die.

I was annoyed but I have come to terms with it. I do some kettlebell stuff for my legs and back and I have recently got a balance board to help with my stability.

Get a punchbag if thats how you feel. Or get a baseball bat and hit stuff. It can't do any harm.

Yes, me. I've learned radical acceptance so I don't waste too much of my precious energy on being sad, resentful, etc. But I much preferred being healthy, energetic, fun and well paid.

Wry hugs to everyone else in this boat

I have a chronic illness and have definitely had angry periods. If you think a punch bag would help, get one. I threw/whacked cushions onto my sofa once when feeling angry. I am more resigned now, it sucks but it is what it is. There's nothing wrong with being angry or grieving for what you thought/hoped your life might be. I think it's a very natural thing to feel.

I feel the same as I'm sitting here riddled with pain from my endometriosis and Adenomyosis. I also have ADHD, deep depression, daily IBS and EDS. I'm always in pain from some part of my body. It's exhausting and leaves me with no zest for life at all.

I'm so angry all of the time. I know it's not helpful and I've been through so many acceptance therapy sessions to try to help but the truth is I'm thoroughly pissed off and no amount of positive thinking will make me feel better.

I hear you

I'm so sorry. It sounds really hard. It is hardly surprising that you're raging.

What currently really pisses me off is healthcare professionals and their lack of knowledge of common conditions. I feel I'm having to continuously educate individuals with information that's plastered across the NHS website. And that they don't listen.

After that I'm just fed up of not knowing what tomorrow is going to bring energy wise, how unpredictable my condition is, while contributing to running a home, and keeping a job.

Sending a hug OP! It does sound soul destroying (I have a chronic condition that gets better and worse so with less of a certainty about not getting better but which is still so frustrating so can relate a bit).

I wish I had the energy for rage! *

i ended up in a&e again this weekend and just cried as the doctors told me there was nothing they could do (post cancer and my body is just broken)

• edited to add that I don’t mean that in a snarky way. It’s a shit club to be a part of and I get it x

Yep it's awful. Chronic illness has ruined my life from a young age. It's hard to come to terms with. I really feel for you. You certainly aren't alone.

I feel for you OP. I'm currently caring for my 19 yr old who's incapacitated by his OCD atm. Right down to having to feed him so he doesn't do laps around the kitchen between mouthfuls. I miss the days of being able to have bog roll actually next to the bog.

It's no life and completely shit when you feel (and watch someone's).it get smaller and smaller.

Cant you get a punch bag if it'll help? .sure I saw inflatable ones in Aldi.

Im sorry to hear all these stories but it’s nice not to feel so alone.

I’ve lived with it for 26 years so far (currently going through a very bad patch) with a potential 30 more years to go……all in the knowledge it will never, ever go away.

I really, really hate it when people say, “How can I make things better for you?” I know they mean well, but nothing will make it better because the condition cant be cured.

Having a chronic condition and all the shit that comes with it, is something that we have to live with every single day, for the rest of our lives. I think it’s that kind of hopelessness that people just don’t understand.

What generally gets people through the dark times is the belief that there is light at the end of the tunnel and that things can get better.

Sadly that’s not the case with incurable chronic condition though is it? There is no light….. it’s just the same long dark tunnel until death.

I get so fed up as I can't go for a visit away or anything. My friends just don't understand how I can't do stuff. I can sort of keep conditions on an even keel whilst I'm at home, but things go wrong if I go anywhere. I'm so bored and frustrated. I know loads of people have it worse, but I get depressed at times. I'm only mid 50s and this is going to be it forever.

I have chronic fatigue symptom and get really pissed off with the 'are you feeling any better yet?' questions. Well no, I'm not. I might be having a better day but it's a chronic and incurable condition that I've had for 6 years now. It's cost me a job I loved and, like others here, my world and what I can do has shrunk incredibly.

The most frustrating thing is possibly people saying, 'Oh yeah, I'm always exhausted too'. Chronic fatigue is very, very different to 'being tired'. I'm another one who can't go away because it will just leave me exhausted, can't plan stuff because actually I might not be able to get out of bed that day. Every day is like setting out on a 350 mile ride in someone's car where you know the fuel pump is busted and you've no idea how much petrol is in there. And when it runs out you feel like you hit a brick wall. And it runs out very suddenly.

I hear you. I also have chronic condition which is incurable. There’s so much that I cannot do now and it’s really hard when I see the things other people can do that I know that I can’t do. How long into this journey are you OP? I was diagnosed with my condition about 25 years ago now. It’s still hard, but I have found the anger about it has lessened a lot over time.

Omg yes... what tipped me over the edge was a letter I got today for an appointment and a number to call to arrange it and number wasn't recognised!!! I've waited so long on nhs I've spent almost 10 grand on treatments and scans and taking time off work. Every person I see tells me to see someone else.

I am sorry to hear that you are struggling, both with the chronic condition and the emotional toll it is taken on you

Have you accessed some therapy/adjustment counselling in relation to your condition? There might be a wait on the NHS, but hopefully it would be helpful for you. Alternatively, there might be support in the third sector specific to your condition. Peer support can be really helpful to. Is there a recovery college in your area for example?

I hear you OP.
I’ve got 2 incurable cancers. They’ve cost me my job, some friends, my health, freedom and loads more. I’ve had enough and it’s only going to get worse.

Most of my colleagues have abandoned me ( shallow uncaring arseholes!) It’s just as well, as I’ve applied for ill health retirement now.

Yeah, all a pile of crap.

Not saying this is possible for everyone but I have lived with a chronic condition for more than 40 years - probably nearer 50 - I have come to accept it and treasure the parts of my life that bring me happiness. After a certain amount of time my condition was a part of me, it has definitely shaped my life and my experiences.

Just this week the NHS delivered a wheelchair for me, because, even using a wheeled walker, I can’t do anything like going around the shop or the library, due to Long Covid.

I have been having physio specifically for long covid for over a year, and honestly, I am so much worse now than I was then. I can walk maybe 20 metres, and where I used to walk into my knitting group using a walking stick, I now need my walker. Dh has to bring me my meals, and I struggle to shower - I only shower every other day, and the rest of the time I have a sit-down wash, then quickly wash my hair. That is all I can manage.

I get breathless walking back from the downstairs loo.

I can absolutely empathise with @LondonLady1980 and others on here - I am trying to reach acceptance, but at the moment, I am feeling pretty despairing - I can’t see that I will ever get any better.

I get it as I'm there too but I always have at the back of my mind that there's someone worse off out there - millions worse off l.

"The most frustrating thing is possibly people saying, 'Oh yeah, I'm always exhausted too'. Chronic fatigue is very, very different to 'being tired'."

This drives me crazy too.

Same and similar age cut jobs hours down again it's killing me and my mental health is affected huge hugs

I used to be angry but then realised that anger wasn’t going to alter my situation. Now I just accept my limitations and enjoy the life I can live.
I think the enlightenment started after losing my DM to cancer which wasn’t so chronic. Then seeing my DSis go through breast cancer at 34, she did spend some time angry but then just got on with life.
When I went through breast cancer myself I realised how different being faced with your own mortality verses living with a chronic condition is.

Ironically the treatment/meds for breast cancer have beneficial effects on the chronic condition, although they have their own set of side effects which are at times like severe fibro ( they are hormone blockers which to me suggests that fibro may well be associated with hormones).

I’m now 61 so it’s difficult working out what’s due to chronic disease and what is just the result of advancing years.

I am a glass half full person so don’t waste energy on unnecessary anger. Every day that I continue on this planet is one more than my DM or DSis who both died mid 50s and for that I’m grateful. I have just adjusted my expectations, and enjoy the life I can live rather than mourning the one I planned.