How to make yourself heard when no one seems to be listening?

Hi @SPN97 thanks so much for your post raising the issues around the emotions of living with arthritis. Finding people who understand and acknowledge the condition and what it feels like is something we all struggle with. A conversation from just this weekend:

"Ooh, you're wearing a second splint on your wrist. Is that to keep the one on your other wrist company?"

(No, we always wear extra supporting aids just for fashion and it's only for show and nothing hurts at all really...)

The person who made the crass comment is kind and does know a bit about arthritis, but totally missed the tact and empathy target with a hugely upsetting and unthinking comment.

The answer is of course to understand and forgive the upset caused, to take time to educate and help others know what it feels like, and to express the hurt, anger, punch the walls and express other strong emotions in private and/or with someone who does know!

We are always going to have to do more to achieve anywhere near the same as the usually fit person can do. ******** for a game, We Are Undefeatable

Hi @SPN97 , I’m really sorry to hear you’re in such a difficult place at the moment. While I’m a lot older than you at 61, I had no idea I had arthritis at all until a fall in Feb 2020 triggered a chain of events and rapidly increasing very severe pain, which less than a month later resulted in me suddenly being told I needed a new hip. I went from very fit and active (self employed in very physical job and keen on outdoor pursuits) to being in constant pain, 24/7, barely managed with huge doses of opioids. From “hero” to zero in a month. Then came lockdown.

In my case there was at least some light at the end of the tunnel, ie hip replacement, but I can really empathise with the shock you describe, and your sense of loss, exclusion, and isolation. The acceptance process is hard, as is the shift in focus to managing your condition and adapting your life around it. It’s ok to feel rubbish about it. For you it may be particularly hard to explain what you’re going through to your peers, it’s very hard for people who have not experienced constant pain how debilitating it is, similarly the depression you are now also dealing with. I would really recommend seeking some counselling to help you cope with this phase, there should be a student counselling service available to you at your University.

But try not to despair. There are many on this site who have been life long arthritis sufferers who say they’ve lead happy and fulfilling lives. At your age you have a right to expect life to be plotted on a continuous upward trajectory, but at my age looking around I don’t know anyone that would apply to. Life has a habit of throwing curve balls, some with happy outcomes, some much more challenging. There have been many such events in my life, you learn to roll with them after a while. The trick is learning to deal with the new path you find yourself on, unwillingly or otherwise. And all those bright young things for whom life is no effort will also start collecting medical conditions and body image problems as time goes on, and will have plenty of curve balls heading their way too. All that froth is what it is, just froth. Real life goes on behind the scenes. All the climbers, fell runners and lunatic kayakers we used to be soon started comparing operation scars, and are now dealing with joint replacements etc like me.

One way that many have found helpful is to always replace something you have had to give up with something new that you enjoy. This can open up all sorts of new possibilities you hadn't previously thought of, and can lead to different social circles that may suit you better than charging around on a football pitch hoping to fit in (oh how well I know that feeling - I was so much happier when I stopped!). There is still a world of possibilities even with wonky body parts. I know I won’t get back all of the life I had a year ago, and I do grieve for it. My husband is super fit, at 64 he is still running, cycling or fell walking most days. I’m still on crutches and can just manage a slow hobble round the village, and realise it’s very unlikely I will ever be back out on top of mountains with him. But my life is far from over, and I’m finding new things that make me happy and engaged with the world, and finding new ways of working to keep my business afloat.

Meanwhile, work with your medics to get a treatment regime that works for you, I’m afraid painkillers just don’t leave anyone pain free, but it can make it bearable so that you can continue to function. And do regularly review this. Try to find a good physio to focus on building up muscles to support your damaged joints (you mention muscle weakness in your affected leg, this won’t be helping). Distraction is also helpful in managing pain - if you lose yourself in something you enjoy, the pain can fade into the background. For example, and counterintuitively, gardening works for me - while all the contortions and effort were aggravating my hip, I barely noticed the pain and mentally felt much better afterwards. See what works for you.

You may find some tips in this link helpful (sorry, ignore the second link, my mistake and I can’t work out how to delete it!). But don't despair, this is an unwanted change of direction in your life, and the beginning of an unknown road is always an anxious place to be, but it really isn't the end, and life can still be good.

Hi @SPN97 - I'd like to thank you honestly for being able to articulate something I too struggle with:

This is a perfect way of saying how this afflicts you. I've been saying it's more like a block or a wall between my desire or knowledge to do something and my actual physical self actually acting it out or doing anything. No amount of knowledge or education on what is the best idea or thing to do has every made this easier. Some times I just can't do it - or anything.

But I've had depression for years longer than I've had arthritis (different reason, same result). Although I'm in a somewhat similar place as you - my knee started "acting up" (being in PAIN) when I was 34. Now 4 years later I've accepted I have osteoarthritis in both knees (one worse than the other), but my GP still isn't happy with this. I've given up, as I'm lucky enough that I can adapt my lifestyle well enough to cope (jobs have all been desk-based, and I've never been into football or similar myself. The physical activities I'd like to do I can't afford, so it's not been an issue). I'm sure it's a battle I'll end up taking up again some point in the future.

I would say, limp! All those other people watching you, they will never understand or even accept how much this is affecting you unless they see it. Telling them it hurts is nothing compared to them seeing you limping, or using a stick (which is what I do when I need to). Take extra long on the stairs, lean on the banister, go out of your way to go up a slope instead (and take longer walking up that too, but better than the stairs). If you want people to care about your pain, your knee, how this is affecting you, then they have to see it. Pretending will only make it worse for you and they will assume it's not that bad, it doesn't hurt that much, 'cos you can walk fine, so what are you complaining about. Also, **** them. Doesn't matter what they think, live you true life the best way you can. Don't go changing how you walk, don't hide your limp or deny yourself the use of a stick or simialr, because you're worried about what they think. Be you. If they can't cope with it, then that's their problem, not yours.

Ranting is good. Let it all out. We all get it here.

Shell 💚

Ah yes, the mental health team. You would think they would be more supportive really... How it works in my area (not sure how much this differs across the country) is that you talk to your doctor, who may or may not prescribe anti depressants (which are definitely worth a try!) and then refer you to the mental health team. You then have to call them up separately to make an assessment appointment with a qualified nurse, who in the assessment will talk a bit with you and suggest you do cognitive therapy. There are two other options - talking counselling and a psychiatrist - but here at least they prefer you to do cognitive therapy. I find the talking counselling brilliant, but sad they can only offer 6-12 sessions on NHS, and the psychiatrist is, as far as my one appointment with them went, more interested in what different drugs they can prescribe. Cognitive therapy can be helpful - it’s all about self recognition of your negative thoughts and learning methods and strategies to deflect or change them to more positive ones. It depends on your current mental state how well it works for you tho- I’ve found that you need to be more on the upswing after a deep depressive episode for it to work well, or be ready to go on the upswing (depression in my experience is very circular or like a pendulum, sometimes you’re going down, sometimes you’re at the bottom, and sometimes you’re going up, all of these times you’re still depressed). So, for me, cognitive therapy didn’t work so well when I’m on a down swing, but when I was at the bottom or on an upswing it was more helpful. On a down having the talking counselling option is better, and at the assessment you can request that instead.

As you can see, I’ve had a lot of experience with depression and mental health help. The help is definitely worth going through the annoyance of the administrative hoops. You should also have been given the phone number for your mental health team, and if you find your counsellor or therapist consistently unhelpful or always assuming you’re doing it on purpose (I mean, who would really choose to feel this way?!?) you can call them up and explain to them that you’re not doing well with this particular therapist and ask to move to a different one. This may delay your help, but it should ultimately lead to better help overall.

Remember, depression will get better. It might never go away (honesty) but it will get better and you’ll learn a lot about yourself and how you work, which is a nice side interest. You will be able to function properly, “normally” again if that’s what you want.

If you want to talk to someone I’m here

Shell 💚