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 received both my psoriatic arthritis and fibromyalgia diagnosis fairly quick and easily. In fact, I hadn’t even suspected psoriatic arthritis or anything beyond fibromyalgia and endometriosis (which is a whole other rant for another day). It was my rheumatologist who spotted the state of my toenails during a visit that prompted him to test for it.
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What I was told after each diagnosis was the following:
- There isn’t a cure.
- We can decrease your pain with medication.
That was in 2003. Nothing was shared either in the form of a conversation with my doctor or pamphlets available his lobby that could or would have prepared me for what would later follow. Sadly, I don’t see much difference today.
#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
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.
Living with daily pain from a chronic illness will take a toll on your mental health.
It is common for those who have a chronic illness like fibromyalgia and autoimmune arthritis to battle both depression and anxiety.Tweet
Patients need to be warned of the emotions they will experience. They also need to be reassured that it is perfectly normal to mourn their old lives and to get frustrated with their bodies.
They need to know that their doctors recognize that the depression and anxiety that follows a diagnosis is normal and won’t be used against them.
For example, many patients will not discuss feelings of depression or anxiety out of fear that their doctors will turn the tables and blame their chronic pain on those feelings. This has happened to me.
Depression and anxiety do not cause arthritis! Poorly managed autoimmune diseases cause depression and anxiety!Tweet
What could help a newly diagnosed patient
- A pamphlet or similar resource outlining the stages of grief and how they relate to losing the life they had, the one that didn’t include having to think about one or more illnesses every day.
- Help patients understand that while it is normal to go through stages of depression and to feel anxious, it is NOT normal to feel this way 24/7. Provide resources to help patients recognize when they need to reach out for help and who they can contact for said assistance.
- Most importantly, patients need to know that thoughts of suicide are possible and that they need to reach out for help if they are experiencing any. If you are currently experiencing thoughts of suicide please contact the National Suicide Prevention Hotline at 1-800-273-8255 or click here to chat with someone online now.
Thank you for reading part one 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