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Living Well with Psoriasis

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Psoriasis: I Won’t Let My Needs Be Ignored

Ayesha Patrick_Psoriasis I Won’t Let My Needs Be Ignored

After living with psoriasis for over 40 years, I’ve definitely gotten used to a few things. For starters, I’ve gotten used to people’s stares, questions, misinformation, or their misunderstanding of psoriasis. As a patient advocate, I’d like to think I’m making a huge impact beyond my circle to demystify psoriasis for the world. It’s easy for me to have grace and understanding for those in my life who simply just don’t know what psoriasis is; however, at times, I’ve been disappointed by those I have entrusted my care to.

One would think that a medical professional would have a broader understanding when it comes to the conditions they are treating, and I think often, they do. Personally, however, I have experienced instances where I expressed concerns about my psoriasis to my dermatologist and other medical professionals, but did not feel heard by them. I later learned that unfortunately, this can be a common concern.

My needs were ignored

For many years, I had only experienced mild issues with psoriasis. Then, a few years ago, I had a flare-up that felt like a wildfire on my skin. It was extremely different from past flare-ups and was very difficult for me. There were moments where I didn’t even understand if what I was going through was normal. I was dealing with multiple types of psoriasis all at once. The worst for me by far was inverse psoriasis, a type of psoriasis that affects areas of the body where skin rubs against skin. This created an indescribable discomfort in more ways than one. The worst affected area was under my breasts.

I will never forget the day I went to get my mammogram in the middle of that inverse psoriasis flare. I already had anxiety about going to the appointment, since I was dealing with itching and burning under my breasts. When the tech brought me into the room for the mammogram, I explained to her that I was having a flare and that I have psoriasis under my breasts. Despite me asking her to be gentle; she roughly lifted my breast to be inserted into the machine. I was in so much pain and told her that she was too rough. After taking my breast out of the machine, I was still in awful pain, and my breast was cut underneath from the thin skin and roughness that occurred. I was so upset that I complained about the incident. A different tech was provided to me to complete the process for my other breast. Experiencing this made me realize how important it is to speak up; although the first tech ignored me, I advocated for myself and the new tech was more gentle, which helped a lot.

When my concerns were dismissed, I found another doctor

There have also been times where I have not felt heard by my dermatologist. I remember explaining to her that I was experiencing more and more joint swelling, inflammation, and fatigue. There were days I could barely walk down the stairs in my home. I had already done my own research and knew that these were tell-tale signs of psoriatic arthritis.

During each of my visits, she would tell me to exercise more, or to change my diet. When I asked her if it could be psoriatic arthritis, she told me there is no real test for that and I should just work on the things she suggested. It began to feel like my concerns were being completely ignored, since each visit I shared the same complaints and no other alternate options to dig deeper were explored.

I knew I needed to find another dermatologist. I reached out to my psoriasis community to ask them if they had a doctor to recommend in my area. A few people recommended the same doctor, so I researched them a little, and then made the switch.

Once I saw the new doctor,  full bloodwork was finally done and I was referred to a rheumatologist. After both my new dermatologist and rheumatologist went over the results of my bloodwork with me, they both mentioned high rates of inflammation. They explained to me that the bloodwork and my physical exam from the rheumatologist was consistent with psoriatic arthritis.

The scary thing for me was that I had expressed my concerns many times to my previous doctor, and none were truly addressed. With psoriatic arthritis, joint damage can be irreversible, and earlier treatment is better. It made me think about the damage done while my first doctor ignored me, and I wondered if my symptoms would be more mild if they’d been addressed earlier. I also wondered how many other people were having challenges with their doctors not taking their concerns seriously.

You know yourself best

It all seems so surreal until it happens to you. I have heard stories from others whose doctors did not take their concerns seriously. I’ve even heard people complaining that some doctors disregard awful medication side effects without offering other alternatives.

In every aspect of this process, you must remember that you know yourself best. You have the right to have your concerns heard and treatment needs met. You have the right to find resolve, and even complain if you need to when others don’t hear you. I’ve learned that even if that means finding another doctor, it is ok. We all have the power to pursue the best in meeting our treatment needs, no matter what.

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Medical Reviewer: Meredith Goodwin, MD, FAAFP
Last Review Date: 2021 Apr 28
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.