Receiving a diagnosis of an autoimmune disease is overwhelming. There is so much to take in, especially if you have no knowledge about your diagnosed disease and weren’t expecting it.
While there are many resources available to educate us about our symptoms and treatment options, there aren’t many resources for patients to be made aware of the changes that will at some point or another become an issue in their personal lives.
I could have saved myself a lot of heartache and frustration had I been warned about and/or educated in the subject that I am sharing with you today.
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#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
This topic was and still is rather confusing.
Within a few months of seeing me for psoriatic arthritis and fibromyalgia, my rheumatologist could see how much I was struggling to walk any distance. In fact, it was he who suggested that I get a parking placard for my car and handed me a form with his signature to get one asap. What was strange is that he never discussed use of a mobility aid.
If we are ashamed to admit we require the assistance of a #mobilityaid we will deny ourselves help of any kind. #fibromyalgia #psoriaticarthritisTweet
Why we hesitate to use an aid
To this day I feel like the talk of mobility aid with a physician is taboo unless you are recovering from a major injury/surgery or have lost complete use of your legs.
It’s is my opinion that it stems from the idea that asking for help of any sort is a sign of weakness.
It may also feed from the stigma that has been engraved into our minds that mobility aids are only for the elderly and those who have lost complete use of their legs.
I fought using one for many years and had a handful of reasons for doing so.
The first being that I felt that by using a rollator or wheelchair I was giving up or into my diseases. That it portrayed a sign of weakness on my part, not my bodies.
Another reason for suffering without using one was because I wasn’t emotionally prepared to deal with the questions, stares, and remarks from friends, family, and strangers.
I walk and roll! #parttimeroller #crutches #rollator #fibromyalgia #autoimmunearthritis #chronicpain #spoonieTweet
More than a bruised ego
Last but not least, I truly didn’t believe I would ever need one and was not financially prepared to purchase what I needed.
I am thankful that I was able to get past those obstacles and later learned to love my mobility aids. There is so much I would have missed out on had I continued to refuse my need of one.
When I mentioned how terribly I hurt whenever I attempted to exercise, my rheumatologist told me to stop. I liked the idea of not adding to my pain, so I did as he said. Unfortunately, it was the worst advice I could have ever followed.
What should have been suggested were exercises that could strengthen my body. Movements that would have allowed me to maintain mobility without an aid for longer.
Yoga and Pilates are fantastic options that were never brought up. If your insurance covers a personal trainer or physical therapist, I recommend seeing one to build and keep your strength. Just make sure that they have been educated and trained to understand your particular chronic illness.
What could help a newly diagnosed patient
- Assistance on dealing with insurance companies to cover or assist with the cost and/or suggestions on how to find an affordable mobility aid..
- A list of different types of mobility aids and how they may improve the quality of the patient’s life when used.
- A discussion or pamphlet letting the patient know that use of a mobility aid doesn’t mean they are giving up or into their illness, but that instead they are taking control by making it easier to get around.
- To be told that their level of assistance may change at any time and that one mobility aid may not be enough. Suggestions of why and when they should consider certain types of aids.
Thank you for reading the final post in this nine part series covering the topics I wish my doctors would have talked to me about when I was first diagnosed with fibromyalgia and psoriatic arthritis.
See what you missed:
- 1 Mental Health
- 2 Therapy is Important
- 3 Intimacy Issues
- 4 What is Health Journaling?
- 5 Pain Relief Options
- 6 Relationship Troubles
- 7 Need for Assistance
- 8 Importance of Self-Care
- 9 Keep Moving with a Mobility Aid
- The Cost of Living with Fibromyalgia
- Invasion of the Brain Snatcher! Tips for Dealing with Fibro Fog
- Four Wearable Pain Relief Devices for Fibromyalgia and Arthritis
- Seven Embarrassing Fibromyalgia Symptoms
- F words that describe what it is like to live with Fibromyalgia
- 5 Ways to Reduce Fibromyalgia Pain