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

SPN97
SPN97 Member Posts: 16
edited 14. Jun 2021, 14:37 in Young people's community

I am twenty-four years old and can honestly say that I never expected to be forced into a position where my physical health was top priority.

But alas, here we are, with Arthritis.

The docs call it mild. It doesn't feel it.

I was keen on football but more to be included in an activity that everyone else seemed to enjoy I now think. Because as it happens the very thing I thought to pursue in order to mitigate feelings of isolation only exacerbated the issue.

I now find myself in the invidious position of 'young male, no prospects' (that's how it appears outwardly anyway) when in reality I'm a hard worker who just needs a little extra support.

I have jumped through every hoop insensitively laid in front of me; diagnosis, pain management clinic (somewhat helpful it must be said), therapy, exercise etc; yet people still seem to think that I'm lying to them? Somehow trying to deceive them? WHAT POSSIBLE REASON COULD I HAVE FOR WANTING TO BE ARTHRITIC AT 24?!

The concomitant depression and anxiety are also feeling chronic, along with the pain, and I simply don't know what options I have to lead a life - not a normal life, I never expected this to be the case - but a life that involves people who CAN. I'm surrounded by these people who CAN. Everything seems so easy and light and frivolous. Whereas my life seems marred, prematurely, by this pained brush.

Waking up in the morning I'm greeted with a fine mist of opportunity and possibility that I try so so hard to dwell in, hoping that some may permeate into me. Every morning I feel devastated that today isn't the day that something, anything, slots into place.

I have discussed my personal situation so often and shed so many tears over this left knee that I've even considered infecting my entire leg to have it amputated. THIS IS AN OVER REACTION - I AM AWARE. But given that so few people from University in particular are willing to react at all to my vulnerability I feel it is my duty to OVER REACT!!!! MY ARTHRITIC LEG DESERVES SOME ATTENTION. SOME LOVE FOR A CHANGE.

Inevitably this bodily prison has had an impact on my emotional, interior life. In a world (society probably more apt) the body is so heavily focussed on, by me too, that I feel an utter failure not being able to live my life physically. I was, not too long ago, in really good physical condition. However, what people fail to understand is that the effort I know I must put into the gym etc. in order to compete is so far beyond what a healthy person has to.

AND THEN, as I know every arthritis sufferer the world over has experienced, the lockdowns happened and no support whatsoever was available (speaking as a University student here with no option for income).

Initially I was looking forward to some respite from the constant effort of doing normal things. Now, however, I am completely terrified of doing most things as my leg feels so much weaker than it did. The solution to this is of course exercise, but I simply can't reconcile my interior self with my bodily self. It is very frustrating and as much as I understand that projection helps nothing in a case such as this I can't help but worry, excessively, over how I'm going to manage this for the rest of my life.

I don't think I'm in a place to receive suggestions I think I simply need an acknowledgement that this condition makes answering any question concerning desire to live life far more difficult to answer.

Comments

  • Jona
    Jona Member Posts: 302

    Hi SPN97,

    Welcome and your so young to be going through this how strong you must be and extremely articulate here

    have jumped through every hoop insensitively laid in front of me; diagnosis, pain management clinic (somewhat helpful it must be said), therapy, exercise etc; yet people still seem to think that I'm lying to them? Somehow trying to deceive them? WHAT POSSIBLE REASON COULD I HAVE FOR WANTING TO BE ARTHRITIC AT 24?!

    Been there done that I actually wear the t.shirt now but I’m 62 I’m disgusted the medical professionals are not listening or taking you at your word all I can say is persistence is the key ask your gp to look at you again have you had any blood tests etc? See a doctor that has experience of arthritis but keep on pushing until you get taken seriously

    The people here are going to offer you lots of help but know your not alone so sending you a big gentle hug

    love Jona 😊

  • SPN97
    SPN97 Member Posts: 16

    Hi @Jona, I was supposed to have a rheumatology appointment about six months ago but the pandemic has certainly had an affect on that. I am trying really hard to keep persevering, I suppose sometimes its easy to convince yourself nothing is going right, nothing is changing, I'll give up. I know this isn't the case I just can't help slipping into it, especially over the last year.

    I really appreciate the vote of confidence and I think you're spot on about this community being a big help, thank you, big hug back x

  • Jona
    Jona Member Posts: 302

    Hi, you could contact the rheumatology dept and ask them if any cancellations could they let you know or you could ask your go to expedite the appointment for you but don’t suffer in silence.

    Stay strong

    love Jona 😊💪

  • Brynmor
    Brynmor Administrator Posts: 1,211

    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


  • wazz42
    wazz42 Member Posts: 153

    Hi @SPN97

    You should be the face of arthritis! You have managed to put into words what a lot of (probally 100's of 1000's) are finding every day. It is so unfair that you are dealing with what I dealt with, things should have changed by now.

    Don't give up on your studies, come here and have a rant whenever you need to, we do understand.

    Sending you strength and ((((())))) (Virtual hugs, guaranteed pain free)

    Wazz x

  • Lilymary
    Lilymary Member Posts: 1,303
    edited 7. Jun 2021, 13:12

    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.


  • SPN97
    SPN97 Member Posts: 16

    I appreciate that so much, I really do, I know I do.

    However, the struggle for the time being seems to be that intellectually I can appreciate the support and kind words offered but I just can't FEEL any gladness, positivity or comfort from them.

    I think I understand what you mean by your - I'll assume - friend, misconstruing the situation but - and I really really hope this isn't coming across as me justifying my thought processes atm - it's even the looks I perceive other people to be giving me. I try so so hard to walk without a limp because there are so many people I know in the small town where I live but as soon as I start to slip into limping, even slightly, I feel so watched, exposed.

    I believe, earnestly, that I won't be defeated by this. This earnest belief just feels slightly delusional right now 😅

  • SPN97
    SPN97 Member Posts: 16

    Virtual hugs - ((((())))) - returned !

    I've really spent a lot of time thinking about this on an emotional level, and I don't think it could have been any other way tbh. Alcoholic parents - AA talk since I can remember - so much in fact that I think It may have played a role in numbing me to feeling what I need to in order to better understand what's happening inside of ME, physically and emotionally.

    My concern tends to be first with others, then myself. This pain has certainly / is certainly attempting to flip the script. I need to let it.

    Thank you, wazz x

  • SPN97
    SPN97 Member Posts: 16

    I'm really sorry to read experiences like this. I can't help but feel responsible for my own condition but when confronted with yours for example all I can think and feel is compassion.

    I really am trying to involve myself in things I know I enjoy or even things I'm passionate about, but continuing to do this and feeling nothing of what I used to seems to compound the feelings of grief and depression. I have approached my GP for the first time about medication and will be going to the pharmacy later to pick it up. The very process required to receive prescriptions puts me on edge. The faceless man telling you which drug will make your situation better... especially when, quite reasonably, I have come to perceive the 'health care professionals' as the least likely group to take heed of lived experience.

    I have read a few things on here from other people close to my age (a woman named Chloe has made an impact from one post of theirs's that I saw) and another big cause of anxiety is that we're yet to get started! I'm still having to persuade people that I am struggling with what I'm struggling with, medical professionals in particular. Now I don't know if this is the area I live in or what but the sheer intransigence is baffling! For example, I had been walking around with a torn ACL for two years, regularly collapsing etc. and it took paying for a consultation privately for me to be told that reconstructive surgery should have been done immediately. This is by no means the only example I have of what I'd quite comfortably label 'gross negligence'.

    In reading back what I've written (whenever i write anything, health related or not) I realise just how angry i am about this. and even though it's been half of my life I had so much hope for so many years that I feels as if it only got serious a couple of years ago.

    Am very confused but ever so grateful for the time and effort people spend on here to help. I hope one day I can offer the same support to struggling people ! And be less self-centred than I currently am. x

  • Shell_H
    Shell_H Moderator Posts: 363

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

    I simply can't reconcile my interior self with my bodily self

    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 💚

  • Jona
    Jona Member Posts: 302

    Hi SPN97,

    Am very confused but ever so grateful for the time and effort people spend on here to help. I hope one day I can offer the same support to struggling people ! And be less self-centred than I currently am. x

    Your comments and your amazing write up is helping people you are definitely one very clued up person, just sharing what your going through will help many

    Hope all is well at the hospital for you your rheumatologist should be liaising with your regular one and they would or should have your notes stay strong and keep us all informed.

    Take care

    love Jona 😊

  • SPN97
    SPN97 Member Posts: 16

    I can't believe how supportive you all are. I'm overwhelmed by it frankly. The last 3 or 4 days have been dreadful; I've been having lots of panic attacks and uncontrollable emotional breaks. Can't seem to shake the feeling that it would be so much easier for everyone, including myself, if I were to disappear. Explaining this to the mental health services was so difficult because they still seem to assume volition on the sufferers part and I don't know how I can tell them any differently that the thoughts of suicide are totally invasive and unless I'm assailed by what I cant help but label an 'episode' I try my utmost not to dwell on suicidal thoughts because I know that in my right mind this would never be an option. I'm just so often NOT in my right mind recently that I'm feeling this way more and more often and have less and less control. I'm frightened but knowing I can come here and not be judged, even if I'm not able to reciprocate the support right now.

    Thank you all so much

  • Jona
    Jona Member Posts: 302

    Hi SPN97,

    You are actually bringing so much to other people here, you are very articulate and have shared your feelings do you not realise just how much you are helping people your turning a very bad personal situation into a really good and positive one .

    We are not statistics or machines we are human with emotions and sometimes check lists on paper or not fitting a usual criteria makes doctors look outside the box

    I want you to know no one is judged here we ask for help and support and trust me you are giving that support the hardest thing to do is ask for help and you have done that so we ask for your help in sharing your experiences with us so take a fist and curse at what life has thrown you and keep kicking it metaphorically it’s taken 6 years so far and I’m still kicking but I’m determined I will not let it beat me

    sending you love, warmth and everything that a tick box or computer screen can’t and I bet you have helped young people here more than you know

    big hug

    Jona xx

  • Shell_H
    Shell_H Moderator Posts: 363

    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 💚