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.
Disclaimer: This blog post contains affiliate links. I may earn a small commission to fund my coffee drinking habit if you use these links to make a purchase. You will not be charged extra, and you’ll keep me supplied in caffeine. It’s a win for everyone, really.
#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
Assistance is needed
I can’t imagine anyone likes asking for help. I know I don’t. But as the pain and fatigue from fibromyalgia and psoriatic arthritis increased, I had no choice but to give in.
I often wonder if it would have been such a painful process had I been warned at the time of my diagnosis. My guess is that it wouldn’t have made a difference in the hit that my ego took, but I do think it could have helped me emotionally prepare for it, even if just a little.
Accepting assistance is one of the hardest things I have ever had to do. #chroniclife #autoimmunearthritis #PsA #fibromyalgiaTweet
Forms of assistance
I didn’t need a doctor to tell me that I was going to need help with house and yard work. My body made that clear before my official diagnosis. But there were areas that I hadn’t considered that I wish I had before they became problematic.
Don’t come over and tell me that I should hire a maid. I know my house is a mess, if you don’t like it don’t come over! #chroniclife #fibromyalgia #autoimmunearthritis #PsATweet
I was fortunate that my husband didn’t complain or hesitate to take over the household and yard chores that I was no longer able to perform. That doesn’t mean that neither of us weren’t surprised by how much of my physical abilities were taken away. Nor did it make asking for help any easier. I hated that I lost the ability to do what I had always done.
I wish I been warned that I could possibly require the use of a mobility aid in the future. That information would have saved my husband and I the sticker shock when the time arrived. When dealing with a million health issues and are trying to stay financially above water, any extra expenditure can feel like a huge blow.
It took many years for me to be okay with needing someone to push me in a wheelchair whenever I was unable to walk.
If I ask you to push my #wheelchair it is because I am physically weak, not lazy! #chroniclife #fibromyalgia #autoimmunearthritis #PsATweet
My world was rocked when fibromyalgia and psoriatic arthritis made it difficult to drive. Having to use mobility aids was tough, but not always being able to drive wherever I wanted when I wanted was a hit I was not prepared for.
I lost all sense of worth when I lost the ability to drive seniors to church, During the years when my husband was over the road, grocery shopping became a “good day” activity. It would be a few more years before grocery delivery would become available.
While thankful I have regained the ability to drive without much pain, I know that it could once again be taken from me. Asking for a ride to a doctor’s appointment was probably the easiest.
I found that people liked thinking they were helping by taking me to the person they assumed was going to heal my body. Even though it wasn’t possible, hello chronic illnesses are not curable, they still assumed it was.
I felt rushed or judged when asking someone besides my husband to take me grocery shopping. The worst was feeling that I didn’t deserve to be driven anywhere besides the doctor’s office or grocery store.
Losing any form of independence is a huge deal and needs to be addressed with patients before it becomes a reality. I understand doctors not wanting us to give up and to think positively, but there is a need for honest discussions about what we may lose if and when our illnesses progress. I am not saying that accepting the loss of driving would have been less devastating had I been forewarned, but my husband and I could have begun discussing what we would do when the time arrived.
I was embarrassed to admit that when extreme fatigue from my chronic illnesses struck, I struggled to watch my own kids. My body demanded rest, but I couldn’t give in because there was no one to watch the children. Even when the urge was impossible to fight, I never achieved the level of rest required because I was always worrying if my toddler had escaped my room or her playpen.
One of the most wonderful gifts for someone who has an autoimmune disease is to have a friend or family member who is available to occasionally take the kids or come over and play with them while we give our bodies the rest they are desperate for.
What could help a newly diagnosed patient
- Reassurance that asking for help is not the worst thing that could happen. Offer counseling or support group information for those struggling with asking for help.
- A list of local cleaning and yard care services.
- Information on how to work with insurance companies to cover the cost or at least pay a portion of mobility aids.
- Tips for finding low cost or free mobility aids in the area.
- List of home and curbside grocery delivery services.
- Tips for using public transportation, Uber, and Lyft with a mobility aid/disability.
Thank you for reading part seven of 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.
- 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