In continuation of the series on Autoimmune Diseases, this article details the top things that patients living with autoimmunity wish that their care providers and family members understood more fully. I interviewed people living with Fibromyalgia, Lupus, Crohn’s Disease, Hashimoto’s Thyroiditis, Celiac, Ehlers Danlos Syndrome-type III, Reynauds, and Rheumatoid Arthritis. Many of the individuals interviewed are living with more than one of the above listed, as once you have one autoimmunity, more are likely to follow. Each interview had a similar tone of frustration, repetition, unanswered questions, and a lack of understanding from others.
Any given day can be a struggle, and the simplest of tasks can feel like an impossible challenge.
Due to the vast number of symptoms, many people reported feeling like they were being treated as drug seeking, crazy, or making it up by their care providers and other people in their lives. All interviewees mentioned feeling like they had to defend the way they felt and advocate repeatedly for certain tests to be run.
Overarching frustration- with the care process, feeling tired, trying to “act normal”, being labeled as lazy, and feeling unsupported by the people in their lives.
Trivialization of pain. When dealing with pain on a daily basis, our tolerance level goes up. People suffering with autoimmunity are also used to regularly covering up how badly they are hurting. “You don’t look sick/in pain” was reported as being heard frequently by friends, family, and care providers. Multiple interviewees mentioned receiving this feedback from triage nurses in the ER when asked to scale their pain.
Feeling like care providers are just looking for a pill to push or a dosage to increase. One interviewee stated “I already feel like I’m taking a 14 pill cocktail every day, I don’t want anymore”. Never mind the side effects from the drugs themselves.
It is OK to ask for help - Not one person was recommended to see a mental health provider, and every one of them eventually found their way to therapy on their own to deal with the emotional baggage associated with the symptoms, diagnoses and social fallout.
Diet is important - Education on what foods to eat to help and which ones to avoid outside of “stay away from gluten” (nobody received detailed education on what that entailed—grains, flour, shampoo, soaps, lotions, candy, soups, processed foods, cheeses, alcohol, and so on).
Holistic practices combined with western medicine have been proven to reduce symptomology in autoimmune patients, yet very few people were given referrals to acupuncture or chiropractic, or told which supplements may help reduce symptomology.
Feeling unheard - many patients took researching the healing process into their own hands, only to be rejected by doctors who pushed off new research or ideas as unworthy of trying. Finding a care provider that is open to looking outside the box when it comes to treatment was recommended by all.
This list is not exhaustive, but encompasses the common themes heard from the people I interviewed. If you have something to add or an experience you would like to share, I would love to hear from you in the comments section below. Keep checking back and stay tuned for an Autoimmune processing and support group starting this Fall here at Coherence Associates – Encinitas.
Reannon Kerwood, MA, LMFT 93397
Coherence Associates, Inc
760.942.8663 ext 3