“I have support from my friends and family, but I still don’t feel that anyone truly understands”

21 August 2019
Indra Kaur looking and smiling at the camera.

Indra, who’s in her 40s, lives with multiple conditions including psoriatic arthritis and fibromyalgia. Here she tells us about the huge impact arthritis has had on her life and why she thinks raising more awareness of all conditions is so important.

Being diagnosed with arthritis is life changing

It all started in 2011 for me, with pins and needles in my hand. I didn’t know what was wrong with me, but the pain started to spread from my hands and wrists to the rest of my joints.

My diagnosis was a long process. It took a couple of years before I was transferred to a hospital who correctly diagnosed me with psoriatic arthritis. I had experienced itching beforehand, but nobody was sure.

Two years ago, my arthritis got so bad that I couldn’t work. It was everywhere. I have costochondritis in my breastbone, which feels like a stabbing pain, and I also suffer from fibromyalgia which affects my breathing and makes me feel extremely tired and foggy.

Now when I’m out in the sun I have to cover up due to my psoriasis, and I experience severe sensitivity and swelling in my eyes.

It affects everything. It’s not just one problem, it can lead to other problems.

It’s changed me as a person and my life has slowed down a lot. I get frustrated and upset because I can’t stay out long due to the pain and fatigue I feel.

I can’t sit down on normal chairs and need my comforts at home, which makes spending time with others difficult and affects how I feel mentally and emotionally too.

It can be hard sharing how much pain you’re in with others

I started treatment about two years ago when I couldn’t walk or talk because of the pain in my jaw.

I kept this from my family because I didn’t want to put pressure on them. I am the type of person who likes to keep things to myself and I find my conditions hard to talk about.

When I did finally open up to my family, they were great and offered me lots of support. It’s always worth reaching out to people even if you feel uncomfortable doing it.

Just because a person looks ok doesn’t mean they are

I’m tired of people saying to me, ‘you look fine’. That’s the part that really gets me down. Even family members can’t see it sometimes.

You might have a bit of make up on, but people don’t realise how hard it was for me to put my shoes on that day, or that I’ve been in and out of hospital every day of that week.

I often don’t get a seat on public transport because people can’t see what I’m going through. I’ve been in tears before somebody stands up. Just because I don’t have a walking stick or a wheelchair, doesn’t mean I’m not in pain.

There needs to be so much more awareness

When I saw the Versus Arthritis advert on TV, I said to my son ‘I cannot believe there is finally an advert showing what it’s really like to live with arthritis. There needs to be much more of this’. I was crying because I thought ‘that’s me’. It’s the first time I had ever seen an advert about arthritis.

I have support from my friends and family now, but I still don’t feel that anyone truly understands what I’m feeling.

I think we need to show more adverts on the TV and continue pushing for as much awareness as possible. It is so important people can see how much these conditions affect people. The more we talk about it the better.

Share your experiences 

If like Indra, you are interested in sharing your experiences of living with arthritis with us, you can email us at mystory@versusarthritis.org. If you’re looking for support or advice you can contact our free helpline on 0800 5200 520. We’re here to help.