NOT invisible

You know what, I do have some good news to share–I’m not totally consumed with whining and venting about this miserable flare-up that’s going on now (thank God for that, right?).

THE GOOD NEWS: I recently got assigned to write another article for Arthritis Self-Management magazine! The topic is “invisible illnesses.” I’ll be interviewing people who have different kinds of invisible illnesses, not just RA, and how having such a disease affects their lives–and the lives of others around them (family, friends, coworkers, employers, etc.). This “invisible illness” topic is something that’s really important to me not only because it personally affects my life in huge ways, but I know that so many other people are stuck in difficult situations because of it too.

How do you get people to understand what you’re going through when you look “normal” on the outside? How do you avoid being discriminated against because of your illness if you do decide to open up about it with others? How do you find a balance that works? Either people don’t take you and your illness seriously enough, or they judge you because of it. It’s a fine line and I think that many people don’t know how to deal with it–neither the person with the disease nor the caregiver/friend/partner/family member.

For the past 16 years, my default mode has mostly been keeping my mouth shut about my disease while trying to continue pushing forward, and living as normal a life as possible. The danger with this approach is it can lead to intense feelings of isolation and frustration, which I often do feel. I don’t know. Despite living with RA for so many years, I don’t have the answers or feel like I know what I’m doing most of the time. But I’m looking forward to talking with others who also understand what it’s like living with an invisible illness and hearing about their experiences. I’m also excited to be able to spread more awareness about this issue. There is a weird stigma and sense of taboo attached to talking about chronic illnesses, and especially chronic pain. It’s frightening and uncomfortable and awkward, but it’s a real problem. There are too many people out there whose pain and struggles are still invisible.

6 thoughts on “NOT invisible

  1. Congrats on the writing assignment! Good topic that needs more coverage. You know, I don’t really expect people to understand anymore what I go through. I have had to let that hurt feeling go. I realized that I don’t totally understand anybody else, so I can’t expect them to totally understand me. I am an oddball person anyway! I view naive comments in a humorous way and it helps me out mentally to a great extent. I hear you loud and clear about the connection to people and the wide gap that is created by this disease. It will always be there. That is why I enjoy articles from you and others, plus some of the FB RA groups that I can read. It is a comfort plus resourceful when Rheumys never call back about weird symptoms! Your articles are most helpful emotionally to me, so I hope you keep on writing! Take care, Cassie Jay

  2. Thank you for writing and sharing. RAnis alienating. I just said that to my husband last week. Tired of trying to
    O make sense of the disease and pain, yet alone explaining to others. Trying to minimize its effect at work so that it doesn’t negatively impact your reputation. It’s crazy. I’m thankful for the power of prayer to help ease the pain both physically and emotionally, overcoming fear and for the love of family and friends.

    Keep writing!

  3. Hello Angela, I posted your blob on my FB page this morning for my friends to understand the experience of someone else living with RA. I got my diagnosis in 1994, but my flare-ups got worst after 2008. Over the years I used perscribed drugs which after a while they became ineffective. Everyone has a remedy for me, ( I thank them) but RA is completly different than Osteoarthritis. What I found has been working for me is a diet that keeps my body alkaline. I do not have to use heavy doses of pain killers as long as I stick to my diet. One day I know they will find a cure as researchers continue their quest to understand RA. Keep on sharing your thoughts and experiences, it will give comfort and hope to someone out their who feels like giving up.

  4. I find the “invisibleness” to be one of the most frustrating things about living with RA. Add to that being young (in my 20s) and almost no one believes or understands what I’m going through because I look fine on the outside. As you said the stigma of talking about chronic illness leads to isolation but I have found that most people, especially loved ones, are actually eager to understand. It’s just a matter of gaining the courage and strength to get the conversation going. I looked everywhere for an RA awareness wristband to help start conversations and couldn’t find one – so I created my own. I hope it can help others start their own conversations and raise awareness for RA in their own lives too. All proceeds will go to the Arthritis Foundation to fund research and hopefully find a cure so we can all be pain free one day! If you want an RA wristband of your own, please visit Spread the word and we can all make a difference!

  5. Hi my name is Jamie, I am 29 years old and have had RA for 27 years. I was diagnosed when I was 2. Believe me arthritis sucks! I totally understand the isolation and discrimination that comes along with it. Lucky for me growing up with the best pediatric rheumatologist who ran an arthritis camp called “camp limber limbs” after going to them through the years helped me know that I wasn’t alone. I remember in school kids making fun and I just proved to them that I was stronger. I worked at a fast food joint that discriminated against me (that was awful and embarrassing) it was 20 below 0 and I asked to not work drive thru they didn’t listen so I got a doctors note, they hung it in the office for all to see and I just remember the coworkers making fun of me, I just went out to the dining area and cried. I wished I would have done something more then I did to stand up for myself and others that suffer from invisible illnesses but I felt so alone and humiliated (which still effects me today). Now I wonder of people my age with RA are out there. There are arthritis exercise groups out there but of course they are significantly older then me. I have so many stories of living with RA (all the PT, different meds ive been on) I could write for hours and give you the weather forecast while I’m at it. It was nice to find this blog and look forward to reading more!

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