Looking for support

Confused88

Not really sure where to start... I explained a bit in the "Say Hello" section, but I suppose I should write some more here. I've been with my boyfriend 9 months. When we met (or should say, talked online, we met on a dating site) he told me he had "leg problems" and used a cane. I found it highly unusual for a 22 year old but just accepted it. It's taken a while of watching him suffer, and getting pregnant, to make me question it.

He's in denial, he's admitted that. He's had problems ever since he could walk (which was late, apparently). A health visitor said to his parents "he's going to have issues with his knees when he grows up". His parents took him to doctors but he was never diagnosed with anything. He was ok most of the time, or so he says, but would have excruciating flare ups sometimes which included all his joints, but his knees are the worst. On his worst day, I've been lucky enough not to witness one, he can't put any weight on his legs. He started using a cane a few years ago, when he got a flare up that didn't go away.

He has needle phobia, and so avoids going to the doctor. He did physiotherapy for a while but said it just made it worse. So he's currently just living with it, taking cocodamol and ibuprofen when needed (I have no idea how much he takes but I think he hides it from me now so as not to worry me. I know he's abused it in the past, along with alcohol).

I'm trying to convince him he needs to go back to the doctor. He currently lives 30 miles from me, he stays with me a lot but he's not registered with a doctor here, so I can't go with him, which I think is the only way he's going to go. Basically, I need to find a way to get him help. He's wrapped himself up in a comfortable little routine where nothing changes, he's got OCD and anxiety (not that he'll admit that either) and change is really hard for him. So obviously this is going to be big, life-altering kind of change. I can totally understand why he doesn't want to face it.

I know he may not have arthritis, and I could end up being on this forum in error. But I don't know what else I can do. He's researched a lot into his symptoms and he thinks it's RA. He thinks the medication has too many risky side effects and as it doesn't stop the disease, there's no point. I don't know, maybe he's right. But I want him to try. I NEED him to try. I wish he wanted to be healthy for me, for our baby.. I'm only 13 weeks pregnant and it wasn't planned, but he wants this baby. I'm hoping that maybe the reality of what that means just hasn't sunk in yet and he'll change his mind when he becomes a dad. But I'm scared of the future, what if he does go and they still can't diagnose him? Or it's something else, something worse? Haven't been able to sleep the last couple of nights with all this going round in my head. Really need to see him taking steps at least, it feels like even me (the love of his life apparently) and the prospect of a new life to take care of can't pull his head out of the sand.

Sorry for the length of this... I'm Irish, we talk too much. :oops:

salamander

Hi Confused,

My first thought is that is that, underneath, he's really scared about his condition (hence safety in routine etc.) and what it may mean and whether treatment would be successful. It was a massive shock when I got diagnosed with RA and it took me quite a while to get my head around it. It can be a scary illness. I often have moments of bleak negativity about it but have support to get over those.

Rather than going with him to his doctor, can you get him to come with you to yours to discuss the pregnancy? It might help him to get involved with the baby and begin think he wants to be well for you both but also to help him get over his avoidance of the medics. Maybe you need support from your doctor too - discuss your worries with them. They might come up with some ideas too about how to tackle the situation.

Best of luck.

LignumVitae

Hey Confused,

Firstly, good luck and lots of hugs - getting pregnant was scary enough I imagine and dealing with this is probably not helping you relax and take it easy with your bump! Your priority is to yourself but 100% well done in wanting to help your fella, he sounds like he needs some intervention.

Going to the doctors can lead to endless rounds of consultations with consultants, x-rays, blood tests etc etc and that, even to those of us who have been doing it for years, can be terribly daunting and frightening. That said, it sounds like your boyfriend is self medicating and there is probably a much better way to manage whatever it is he has. Arthritis plays with your mind ias well as your body, constant pain, changes to your body etc can be overwhelming and lead you to think many many things, mostly negative. Add in OCD, alcohol etc, plus the length of time he has been dealing with this alone and you have quite a recipe to contend with.
There are over 100 forms of arthritis that have been identified, many of the symptoms 'overlap' and one form can be confused for another, therefore, self diagnosis is not the answer and will just cause more fear and confusion. Yes medication has side effects but so does his self medication regime and to be honest, once you are on a treatment, generally you are very thoroughly managed so any side effects are identified if they happen. There is no magic cure but there are lots of things that can do amazingly at helping your body respond and give you control and life back. I know I went on a supposedly nasty drug and it felt like I was 10 years younger again - I got so much from that.

I wonder whether you or he could speak with his GP and get them to come to his house to chat things through in a more informal and less frightening setting. In my experience, if you are open with the medics treating you about your hopes and fears they work hard to help you through them . I think it would be really useful for you, and if you can get him to, your boyfriend, to call the helpline (0808 800 4050). The people you will talk to are superduper lovely and might be able to talk you through some ideas and talk him into a position where he feels he can confront things. He could also follow your lead and put something up on here as a first step, we will help support him to take the next step and possibly reading some of these posts may help him see that the biggests problem is fear and that there are lots of ways of managing and dealing with whatever is going on.

This is a long reply, sorry (I'm not Irish so I don't have your excuse ). I will end by saying you are a super star and quite amazing to be trying to help him out like this when it would be quite easy to just focus on you. Best of luck with everything and don't worry that you might have the wrong forum, we're rather a nice lot and we will support you and your boyfriend.
LV xx

hileena111

Hi Again
I answered on another forum......just to say it is so normal to go into denial. A lot of us {inc me} did when we first realised

Love
Hileena

Colin1

Well its some story, you need to get him to see the GP, he needs to know how hes making you feel and the effects its having on you, he needs to take on some responcibility for himself. As drugs not fixing it i suffer with RA among other things a year ago i was in a wheelchair now i'm walking again, not pain free but better than i was, we are all scared and scared of treatment but its better to have than not to have. He needs to think of the future with you and the baby.
colin

stickywicket

You've got some good advice there from the others, Confused88, and I've nothing much to add to what I wrote on the 'Hello' forum.

Your man needs to deal wih this, whatever it is, for his sake, your sake and the baby's sake. There is more to being a Dad than creating a foetus. It might be difficult to diagnose and it might involve needles but self-diagnosis and self-medication are bad choices. It might be that his first step must be to talk to someone about why he is so afraid of tackling his problems. He could do that with our Helplines. Pretending it will all go away won't work.

valval

welcome first off the medication is so much better these days they make such a difference and often most of us do not get many or any of the side affects. so go with him to his doc if you can tell them how much it is affecting him and he will not have to have needles (well some for bloods) but do not mention them but if he does not get treatment.if it is ra he can get organ dammage as well as joint and muscle dammage. if it is very important he gets help val

Confused88

I've tried to talk to him about it tonight and have ended up in tears. He just shuts down and won't talk. He did say, that he feels trapped. How can I force him to do something he really doesn't want to do? I feel awful, he's just gone out on a craving run. He's so good to me and I feel like I'm just bringing him down.

LignumVitae

Confused,

Don't be so hard on yourself- I may be being a bit gender biased here but a cravings run compared to 9 months carrying a baby? Who is being so good to who exactly? it doesn't sound like the one way street you think it is.

Confronting arthritis takes guts and honesty. I really think the helpline could be a wise first step for him. If arthritis has been with him so long then it will be very hard for him to step away from his denial but don't see you trying to help that as cruel- the old line is so true, sometimes you do have to be cruel to be kind. His current approach sounds like it isn't successful so there is a good reason to try something new. it is going to take time for him to come around to that idea, on here there are lots of us who have taken a while to make a decision to change a med or accept aids and help because doing so seemed frightening but most of us who have been in that position will tell you how glad we are to have done it in the end and what a difference the change made to our lives. We will all also tell you that we have felt trapped, isolated and very much alone and in fear at times but there is a better way than living in a trapped state. Gaining control with the help of a medical team is, in my opinion a vital first step away from the trapped state.

Your priority must be to you and your baby so look after number one and two to be first!

Good luck and big hugs,
LV xx

earthspirit

sorry to hear about your life as it is at the moment but i can see from the answers given by others, that there is lots of info and support for you already.

fear of needles is something really quite easy to deal with if the situation is fully explained before hand to a doctor or practice nurse. also it might be possible to do something like a series of xrays which could show any damage in the joints. there is better pain relief than your bf is taking and also, they might do steroid shots in the butt to reduce inflamation. these are actually really not painful if you just relax the muscle. they are far less "FEELING" than an iv to take blood for instance.

i have to add here, which might go against the grain of common thinking, but your bf really does not have to take any of the meds if he has RA. nobody can make you take any meds for any condition. they will not cure, but only damp down the condition & hopefully prevent possible deformity. however not everybody gets deformity. ive had RA since childhood undx and it is only now that i am 52 that i have a couple of crooked fingers. i do have osteophytes (bone spurs) on numerous joints but you cant see them and apart from making a few nerves a bit jangly & painful, i can live with them living in my body. i think that it is totally individual choice in taking meds and the doctors will listen you what you have to say against taking any meds. they actually like this, when they are questioned and actually get some real responses from patients. many just do what they are told and then complain later when things dont work out right.

22 is far far too young so just go by each day suffering. do whatever you have to regarding making him see doctor. you can also make an appointment to see his doctor yourself. you go alone and tell the doctor all the issues, or write him a letter which you let him read, always quicker than actual talking.

the doctor will not discuss treatment with you after your bf actually gets there but you are doing the groundwork.

hope your pregnancy is going well and hope you able to get other half to take some positive action in view of the fact that he is going to be a dad.

stickywicket

He is trapped. We’re all trapped but sticking his head in the sand will not make him less trapped. To be less trapped he needs to look at his ‘prison’ and work out how much room for manoeuvre he has. There is so much that is still available to all of us no matter how restricted we are by our disease.

LV has given you some excellent advice there. The fact is that you can’t ‘force him to do something he really doesn’t want to do’. You can ask him to do it for your sake and for his baby’s sake but, if he refuses, you can’t make him. You say he is ‘so good’ to you. I hope so. I see plenty of evidence that you are good to him.