Mental health and RA

Paigie

Joined today in hopes to meet like-minded people and to have discussions about struggles we all face. I am a 21 y/o female who was diagnosed with RA at 19.

I feel the impact of this condition on mental health is not spoken of enough. I live with feelings of anxiety as I fear when my next flare up will be, anger when people around me expect me to pick up after them as they don't see the pain I am in, and people belittling my struggles. I feel as though I am in a grief process at times for the life I could have lived as a young adult before diagnosis and the drawbacks of having the disease. I feel alone and like people my age do not understand. I worry for my future as I want kids but I can't have them unless I alter my medication. I worry what the effect of that will be and if the disease will limit me as a mother in the future.

Ellen

Hello and welcome to the Online Community @Paigie

I see from your post that you are a younger person who was diagnosed with RA at 19 and are now 21. People here often say they are grieving for the life they had anticipated I promise you that you are no longer alone.

I totally agree with you with regards to the impact of having Arthritis on our mental health. It is not spoken enough about, but in here our members seem to be very aware of it. The subject comes up frequently and I often suggest people contact our Helpline which is open 9am till 6pm Monday to Fridays:

https://www.versusarthritis.org/get-help/

I am going to attach a link to two people's stories which might ring some bells with you:

https://www.versusarthritis.org/news/2021/october/how-does-arthritis-affect-mental-health-two-people-tell-us/

and this one which I hope might be of interest as you mention the fear you have about having a family of your own in future:

https://www.versusarthritis.org/news/2021/january/motherhood-and-life-with-rheumatoid-arthritis-jessica-s-story/

Apologies for bombarding you with so much information, but please do keep posting. Living with Arthritis tends to be one of the most popular categories.

My very best wishes to you

Ellen.

PeterJ

Hi @Paigie have you had a look through the Young People's community? There may be people you can connect with who can share their experience and support

https://community.versusarthritis.org/categories/young-peoples-forum

Best Wishes

Peter (moderator)

frogmorton

Hi @Paigie

Nice to meet you. I am older than you by far, but your post did strike a chord with me as my youngest daughter was diagnosed with Leukaemia at 16 and gosh that was traumatic. None of us expected it. Such a shock. 2.5 years of chemo and then having Avascular Necrosis as a result of the dexamethasone part of the treatment. She needed hip surgery and a replacement shoulder. Where were her friends? Many disappeared by the wayside when she couldn't do what they were doing which was dreadful. She is 24 now and still has absolutely not recovered mentally.

The world isn't geared up to younger people getting seriously ill is it?

Now to answer some of your practical comments when we have what can look very invisible to outsiders.

Who is asking you to pick up after them? Is it family because if it is have you ever thought about these two 'stories' to explain the impact on you?

http://batsgirl.blogspot.com/2008/04/gorilla-in-your-house.html

and

https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf

I hope they both work for you.

Many of our forum members here have gone on to have children with RA. One @stickywicket did so back in the pre DMARDs days with only paracetamol to help her. She could definitely be worth talking to in my opinion. My own Arthritis started when my children were at primary school luckily.

I know you aren't 'recently diagnosed' but I think this is really good.

https://www.versusarthritis.org/news/2021/august/how-to-adapt-when-you-ve-been-diagnosed-with-arthritis/

Please don't feel alone we are here and will help all we can ((()))

Toni x

TLee

My heart goes out to you in dealing with this at such a young age. I am quite a bit older, and dealing with osteoarthritis, but I can relate to the mental health issues that come with the pain and limitations. I also agree that they are probably not addressed as much as they should be--maybe still a bit of a stigma about even admitting such a thing exists, let alone that it affects you personally. On a bad day, I can feel really hopeless & I want to just curl up and be left alone. The only thing that I have found that helps is: time. I eventually cycle out of that bad place & feel ready to get on with life as best I can, sometimes with renewed hope & determination. I think it is important that we give ourselves permission to feel sad and to not feel guilt for that, even though people seem to think we just need to "snap out of it". It is also important to recognize when/if things get to a point where help may be required. For example, a short time ago I realized that my thoughts had taken on a component of not even wanting to go on in a life of pain--that scared me, and I began using therapeutic techniques to turn things around. I have had success with mindfulness training, even if some parts strike me as a little silly. Also, the benefit of a forum like this can't be ignored--use it often! Sending you good thoughts!