Becoming 'disabled'

[Rainraindownthedrain]

I apologise for the title, I can't think of another way to frame the question. Pre covid my DH was tentatively diagnosed with a rare condition. I say tentatively because the diagnostic path has been very long, in part due to the rarity of the illness, in part just because the system has been really slow for us. The diagnosis won't be confirmed until he sees a specialist. However, Covid has put that on hold and so we are not expecting that to happen any time in the near future.

The condition can affect people in different ways, it is 'life limiting', can be degenerative, can be static, can be life shortening. Basically we don't know. I don't know how much more a specialist could tell us. Maybe more, maybe not. It's not a curable condition, so there's no rush from that perspective. There are some treatments to lessen the symptoms, but again, it's unlikely to be a game changer.

In the meantime, whilst we wait, my DH is getting worse. The condition doesn't generally affect his ability to work (yet...though he did have to take some time off recently). But he is struggling increasingly day to day (with things that require fine motor skills, and walking).

We're finding ourselves at a bit of a loss. As I've said, nothing will stop this, but I'm not sure what the future holds and at the moment we don't have any formal support. Without a formal diagnosis we're not even sure what to tell people (like work), or how to manage it (I'm not sure if it would be sensible for him to take a little time off whilst he's feeling unwell or whether that's silly). Most importantly I have no idea how to help him on a day to day basis to make his life easier, and make him feel a bit better. He doesn't have a formal diagnosis, so I'm not sure what support we could access - it's an up and down condition, so on some days he appears totally normal, which makes it even harder to explain to people, as they can't fathom that at other times he just can't do day to day things. He isn't very assertive and I'm really worried he's just getting lost in the system.

I was hoping that someone who's been in his position, or mine, could just help give us a bit of an understanding of what support is out there or what we could ask for from the consultant (when he finally speaks to them), in the absence of the option to meet with the specialist. I was thinking a chat with an occupational therapist and physiotherapist sounds like it could be helpful. But I'm also wondering whether we should start planning for a scenario where he can't work too, and I'm not sure at all what that path looks like. Thanks for bearing with this very very long post!

[Charleyhorses]

Is there a society or charity for the illness that you could ask for help?

[TabbyStar]

Or a Facebook group? There seem to be groups for most conditions, or if it's rare then a similar group, e.g. would ataxia or Parkinson's groups be facing similar things? One of the factors to consider might be whether time off to do things to mitigate the condition would be useful, e.g. exercise, physio or just reducing stress. I'd also say you should definitely be preparing financially and practically for him to not work anymore, not sure what your ages are, but based on experiences with my friends in their late 40s and 50s I'd advise anyone around this age to be considering that anyway.

[Rainraindownthedrain]

@Charleyhorses yes there is. We've held off contacting them until now as it wasn't a formal diagnosis and we've been led down a few false avenues before. It's hard to explain but it's made it hard to reach out for support as we're not sure and feel a bit like frauds. Also we're wary of mentally getting our heads around it if it then proves to be wrong. But given that it's likely to be a long time, it might be a good time to do that now. Thanks

[Charleyhorses]

I genuinely think that is the way to go. I'm sure that there will be others waiting for a diagnosis and they will be able to advise. I have several friends with MS and they have found the society really helpful. They are not the sort of people to ask for help by nature but did find the support they needed.

[Rainraindownthedrain]

Thanks @Charleyhorses I'll do that.

@TabbyStar I think you're right about financial planning. We're in our 30's with young DC . We'll get through it I'm sure, but lots to think about. Wish we had certainty.

[TabbyStar]

It sounds like you may not have certainty even with a diagnosis, which is difficult. I think I'd have a "worst case scenario" plan, whilst also doing whatever I could to avoid that scenario. Diagnosis can be really slow though, and ongoing support difficult without a fight. IME with family, occupational health have been really good, but other support more difficult to access, and though I hate to say it in lots of ways, if you're able to pay, at least initially, that might help things move along. Also as already suggested see what charities can offer, e.g. can they point you to experts or are there any trials they can help you access.

[notapizzaeater]

I'm on a lung cancer forum, we get people there who haven't been diagnosed yet, sometimes it is, sometimes it isn't, we don't treat them any different - regardless of whether it is or isn't, they are still scared and worried.

[justanotherneighinparadise]

I was also going to suggest finding the charity that supports the condition.

[BiBabbles]

I know that fraud feeling well. Between how long it can take to get diagnosis, differing opinions on certain diagnoses, it can be hard. I even ended up finding out I was misdiagnosed after 5 years, the vast majority in the support groups I was in were really understanding. Bodies, and the medical systems, are complicated.

I agree with the pp poster about making long-term considerations, but in terms of daily life, also focus on what could be most helpful now. With or without a diagnosis, what in your environment or daily life could help make the harder days easier or to make the most of good ones? I tend to try to balance both the long and short term, and sometimes when it's so uncertain, the short term can give a needed to boost to be able to tackle all the feelings and thought about the long term.

[SuperLoudPoppingAction]

Would it be worth joining a trade union so there's access to legal advice in terms of asking for workplace accommodations etc.

[mrsfeatherbottom]

Definitely speak to OT (where I live, you can self refer). I had an assessment recently over the phone and then the OT came out with some equipment to try.

[Pollaidh]

Yes try physio and OH, they can be really helpful. Even with working from home, my org's OH ergonomic specialist came to my home office to check all my equipment, chair, desk, screens, etc (and it was all pretty decent stuff to start with) and then recommended better gear and it was shipped to me.

It may be worth asking for an OH Appointment through his work. I've ongoing disability plus a new issue which has only been tentatively diagnosed, due to not being able to get it seen to properly during Covid. The OH doctor was still able to make recommendations, with the proviso that 'due to Covid... unable to confirm etc'.

You can get advice on treatment, pacing techniques, equipment adaptations etc.

[Rainraindownthedrain]

Thanks everyone, really appreciate it, I hadn't even realised self referral to OT might be possible, that sounds like it could be really helpful.

Also appreciate the tip about discussing with work OH. Even just a quick look today revealed they'll contribute towards the costs of a new office chair to help people working from home. It seems like such a little thing, but it means he can buy a proper desk chair with arms which will be a lot better for him. He's going to have a chat to his manager at some point too, just to make them more fully aware of the situation.

Next consultant appointment is in a few weeks so I've got him to write everything down. It's a phone appointment and it's been such a long time since they saw him face to face that they're not really aware of the deterioration or the impact it's now having on day to day life. DH has spent a long time downplaying things, but think it's time to be realistic and pragmatic. Hoping they'll be able to shed a little more light on things at the next appointment, or give a vague timeframe of when the specialist may be able to see him.

[Pollaidh]

Just to say once broaching it with work, I'd follow up immediately with an email confirming what was discussed verbally. This means that (should they be bad employers) they can't learn about his illness verbally and then make him redundant whilst pretending the conversation never took place. As soon as it's in writing there should be some protection from unfair dismissal as it sounds likely he'd be classed as disabled if it went to court. Many employers are lovely but there's always the odd bad one.

[ExerciseBeaver]

Hi op I was dx with a rare progressive condition, bit different as I had surgery but then had to wait 4 months to find out what it was. I found focusing on what I could do and small daily goals helpful while waiting. I did NHS coach to 5k, not saying this is appropriate but it gave me structure. I also did an 8 week mindfulness course while waiting. I told work what had happened before the diagnosis and they referred me to OH, no reason you can't see them twice. I was on facebook forums. Funny one person mentioned the condition to me, I looked at the website and thought there is no way I have that, that just wouldn't happen to me. And here we are. As soon as I got the dx I spoke to the charity. One piece of advice have to become your own advocate. People are often very helpful. Do speak up and don't feel compelled to underplay the impact.

Ultimately the more positive and proactive you can be the better the quality of life. Still learning myself.

[Plexie]

Do you know if his employers are sympathetic in dealing with illness and disability? If they are, I would inform them of the situation in case his symptoms cause performance issues, so they know the reason why. Disability is a protected characteristic under the Equality Act so declaring it to his employer will give him some protection in certain situations.

Although if his employers aren't trustworthy, he may want to hold off telling them.

Is he in a workplace pension? Some have provision for early retirement on ill health grounds. It's not granted lightly, you literally have to be unable to work any longer, but it is reassuring to know that it's possible. I don't know if it's just provided by defined benefits schemes (mostly public sector nowadays) but it's worth checking.

Also check if his employer provides "death in service benefit" (which is good to know anyway, not just because he's ill at the moment. Anyone can die suddenly, eg car accident.) It's a payment (eg three times annual salary) paid to the family if an employee dies. Sometimes the employee has to nominate the person the payment is to be paid to, sometimes it's spouse or next of kin. You are actually married aren't you?

If his employees are a large company they might have their policies etc online. I'd have a good hunt through the HR webpages to see what they provide.

[Rainraindownthedrain]

Thank you all for the helpful advice. @Plexie we are married and his employers and pension are both good, but he's going to look up all the HR and pension stuff this week and forward it to me to go through. I'm a SAHM, so obviously that will need to change in time.

@Pollaidh great advice to put things in writing.

@ExerciseBeaver thank you, you're right about the importance of not underplaying the impact. My DH is very good at just getting on with things and has done so for a very long time but it really is affecting him a lot now. We've written everything down ahead of his next telephone appointment, I hope that it will give the dr a good picture and have encouraged him not to gloss over things! He'd recently done similar to you and taken up running, to give him something to focus on. Unfortunately he has been too unsteady to do it for a little while now, which I think is getting him down too. He feels a bit old before his time I think.

[ExerciseBeaver]

I wish him well op. One thing I have learned is there is always alternatives. I tried to get back into netball and it was rather a depressing moment when I decided I didn't want/couldn't do it. I then discovered walking netball!!! As soon as the covid thing is eased I am training to be a walking netball instructor. It is very hard but the analogy focus on the donut and not the hole is the thing. I am still partly in denial but probably the only bad thing to do is nothing...Identity wise it is hard to sometimes not feel a bit done- I am single and no kids and think well now I am screwed but this isn't true. Also the experience of the illness is as unique as you are. Mine comes with breathlessness and there is a mind/body connection, I can't breathe so well, feel anxious, then think I can't. Now I have realised this is a trap. I have to do more, in a reasonable way-that is the challenge, working out what the 'reasonable' is. No one who isn't experiencing the same symptoms can really fully understand this, so talking to a specialist nurse or someone with lived experience of the condition is so important/useful. Sorry rather a lot of waffle. Best wishes.