I often feel shame

Jack_D

I am 24 years old and I have Juvenile Idiopathic Arthritis, Fibromyalgia, Chronic Pain, Migraines, IBS, and Urticaria. I have had a few of these conditions since I was 4 years old, and others diagnosed over the past 10 years. I have tried to work in the past but have had such great difficulty that I find it almost impossible to maintain any consistency as if I do anything, I am both mentally and physically exhausted for days afterwards. Because I receive benefits, people often look down at me, even family and friends sometimes. And I often feel embarrassed and ashamed when someone asks me what I do for a living and I have to explain that I don't work, as I feel instantly judged in a very harsh way. I keep myself busy and surround myself with good family, but even then, people don't always understand if they haven't been through similar situations. But I have to plan my life around recovery of social situations or appointments etc. And it's very draining. Yet I still feel very ashamed when I tell people (especially family) that I don't have a job.

Jack_D

claudsl

Hi @Jack_D and welcome to our online community.

I can completely relate to you on this. I was diagnosed with JIA when I was 10 years old and I felt embarrassed about it. I think it's the stigma that arthritis is an illness that only old people get. It's only in the past 3 years that I decided I'm not going to be ashamed and I now hold fundraisers and talk more openly about it. Have you ever tried counselling? It might be worse talking to someone about this, it could be your first step to opening up.

All the best, Claudia x

Bryony

When life has thrown you a curve ball then you should not be made to feel shame. Sadly there is so much negative press about skivers and shirkers when the reality is people have health conditions that limit what they can do, and who would just love to be able to be healthy and working, that they are driven to feeling shame. Keep strong. Many do realise what you are going through, having been through similar at some point in their lives and don't wrongly judge you. Family can be quite judgemental though, and if that is the case it can really hurt.

The advice from Claudia is good advice.

frogmorton

Hi Jack. I am so sorry people are making you feel ashamed. I think they actually think you have a good deal not going out to work. If they could like a day in your shoes eh?

Our identities do suffer when people imply we are adding nothing to society, but I am sure you are giving something back. You no doubt listen to your family and friend's troubles? care about them and share your time with them?

I wonder whether there's anything you can do from home - even voluntary. Online like our moderators for instance? they are volunteers. Or something similar. I expect you'd contact our admin @PeterJ if you felt you could help here.

I volunteer at a local foodbank - the easier stuff of course, but I'm there. The advantage of volunteering is if you can't manage it one week you don't have to go.

Sorry I don't think I explained what I meant very well there did I?

Take care @Jack_D

Toni

Jack_D

I totally agree. I've been looking for some voluntary work that I think I'll be able to manage like you said. I'm just nervous trying to commit as I don't want to let someone down when my health isn't up to it. Especially if the cause is important etc. But I appreciate you responding

Jack_D

Thank you all for the messages as well, really helps to know I'm not the only one going through this

Mumof2

Hi Jack, I was diagnosed with JIA at 8 years old and I still feel ashamed about it. I’m currently off work and have been since January. I hate people knowing I’m unwell, I see it as a weakness and the fact that I’ve been told several times by several different people, including doctors, that it’s in my head, I’m too young for arthritis and I’m just an achy person has made me want to hide it. My family are amazing and they do their very best to support and help me, but outside of my immediate family is different.

I’ve joined this community just last week as I’m desperate to stop feeling alone and isolated. I have barely left the house in weeks and I struggle to look people in the eye when I do. It’s not fun. I also looked at volunteering but it’s not an option at the moment because I’m so restricted in my movement/reliability of my body. I have however read about phone volunteers who talk to people who feel lonely and this could be an option. Things like age uk telephone friendship service. You don’t have to leave the house and I think you can choose from hours to be available for calls. Maybe worth a look? I hope you are being kind to yourself.

annabanana

hi @Jack_D , I completely understand what you’re going through. I was diagnosed with JIA/RA when I was 15 and I was so embarrassed that I didn’t even tell my high school and allow myself to get exam accommodations until my final year, which of course meant I failed 3/5 of my exams that year. I refused to do my physio or take my meds despite desperately needing it , as I thought “if I ignore it, then surely it doesn’t exist”.

Have you tried volunteering? I volunteer here at Versus Arthritis and could not recommend it more, nowadays when people ask what I do, I say that I am focusing on volunteer work to strengthen my CV whilst receiving ADP benefits - most people understand and I’ve never faced criticisms for it. As @claudsl has mentioned, I strongly recommend counselling, it has definitely helped me through my diagnosis - the NHS waiting times were ridiculous so I googled private therapists near me and ended up finding a really good one who works remotely via zoom (which was perfect for me).