Any one else feel lonely with thier condition ??

lonleyplanet01

Sorry in advance if this is a bit of a depressing post..

For as long as I can remember I have always felt alone with this condition. Not so much as in not knowing other people with it because I work with and have come across many people with a variety of different types. How I mean is, with those who are meant to be closest with you.

Growing up from 15 - 25 my medication and condition fluctuated a lot. Probably a lot to do with lifestyle choices but it was hard to keep a steady flow on the condition. One minute I was absolutely fine (by which I mean controlled pain and flare ups) the next minute I had mild to severe flare ups sometimes one after another. A lot of my friends and family at the time didn't know how to handle this and I got that, I mean why would they? They found it hard to understand why on Mondays (Methotrexate day) I would be so unwell.. Sundays would usually be a painful day and why from one day to the next I could walk, stand, run or whatever normally but the next I couldn't?

I dealt with it somehow but I thought as we grew up it would get better, people would start to understand.

I'm in my 30s now, have a child and a 'partner', he knows about my condition and has for 10 years. He doesn't get it though. We have had detailed conversations about it. His watched me take tablets for the condition, for the side effects for the pain. His seen the good the bad and the ugly, yet he still fails to get it. I don't expect him to fully understand but its as if he doesn't see it at all.

For example.. I really like exercising and I do.. I recently had a long run of 5 weeks!!! 5 weeks of pretty much a manageable condition. Then I got sick (not arthritis related) 3 weeks off needed to recover, then came a flare up, moderate in my back and neck. as usual I get told I'm procrastinating, take something for it. But often when I take something for it I also get told I take too much and I'm getting used to it. I've got used to brushing this off, I shouldn't but I have.

Then tonight.. he made a new friend on the PlayStation headset, talking away. I hear them talking about methotrexate. He says oh my girlfriend is on that.. he asks 1000 questions about their condition and tells me its worse because their basically dying because their cells are attacking one another (yes I explained this is what happens with Arthritis but..) they go deep in conversation and I hear him really interested in her condition saying how bad it must be. My heart just broke.. maybe this sounds a bit jealous because yes I am.. why cant he see that in me? why does he think that I don't need help, that I'm serious when I say I'm in pain? everyday I suffer in silence. I get on with it and it makes me sad. I just want to say, can I have a little help please but I'm too scared because it usually turns into a conversation about how I am using my condition as an excuse.

I think I just needed to get that out in a place I feel safe and if anyone feels the same please reach out. equally if you think I am being dramatic also please do tell me. I'm actually a very understanding an reasonable person..

Aj_x

Hi lonleyplanet01,

Firstly just want to say hello and welcome to the online community forum.

Now you have found us, your not alone anymore. Im sorry you have felt like that throughout your life. There are many forums on here that might be of interest to you.

The flare up probably came because your immune system was low, but if its your consultant telling you to take the medication for your pain then don't let anyone else tell you that you are taking too much (as long as you are taking the correct dosage)

In regards to your other half, its a natural reaction to be jealous when he's speaking to someone else about their condition. Especially if all you want to do is get him to speak to you so he can help you. However, (and Im not making excuses for him) it might be easier for him to speak about someone's condition who he isn't feeling emotionally attached to. He knows he isn't going to get hurt and also he doesn't have to accept that you have the condition you have because then he will have to admit to himself that you are poorly. Here is the Helpline number if you would like to speak to anyone over the phone.

0800 5200 520 I have also attached the link for the Versus arthritis website if you feel you cant speak to anyone you might find some comfort or information on loneliness or information to speak to your other half about. https://www.versusarthritis.org/

AJ_x

czkd

Hi lonelyplane. You are most definately not alone.
The people who suffer with this extremly dibilitating thing are people too. I think the ones around us who are close to us can sympathise with it but they can never fully understand it.
With regards to you partner showing the interest to the gamers other half. I think that's because they want to be seen as a nice person to others (which I'm sure he is) but when you live with someone with a condition it's run off the mill I suppose.
My partner is great and tries to be very understanding. However if I'm struggling and need him to run my back to ease the discomfort he won't because it makes his arms ache, or he's too tired ect. I believe that if he really knew how I felt he would do it. Also because he lives with me every day to him is same old same old and gets monotonous.
I can understand this but like you say that doesn't make us feel great and can make worse those worthless kinda feelings. I get those too.
If your ever struggling (or not) and you want a natter, it would be great to talk to you.
Thinking of you. Take care and stay safe.

dreamdaisy

I am not alone with it but I deal with it on my own, through choice. I don't expect healthy people to even begin to understand how it is living with a chronic condition because they are comfortably blinkered by their situation. For them pain is temporary, transitory, feeling tired is sorted by a good night's rest, energy and enthusiasm is always there to be drawn upon; how can they be expected to understand? How can I explain something so unfeasible? Nobody understands stuff until it happens to them, that is part of the human condition. My doctors are familiar with the theory of arthritis, every patient's arthritic reality is different.

My husband has been with me every crumbling, faltering step of the way of the past twenty three years. He has seen the physical decline but has also seen that the essential me is still intact, still there, still being loud, still being creative, curious, interested. He sees that I still look up and out far more than down and in. He feels frustrated he can do nothing to make me better, men like to fix things and I am unfixable, something which I completely accept, it's OK. He does have some insight into my kind of life as he occasionally has a bout of gout which lasts for all of five days and rocks up maybe annually. Then when it's gone away he forgets, of course he does and he should. I often ask myself how I would cope if the roles were reversed, if he was the affected one with something and I was healthy. Would I fully understand? I truly doubt it.

Like Princess Di I have three in my marriage viz. me, him and arthritis. The latter has changed our plans and how we are living our lives but that would have happened anyway, life always brings changes. DD