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SOS! How Do I Help a Doctor Understand My Skin Disease?

No one, including your doctor, should tell you that you don’t deserve better. Learning how to improve communication with your doctor is important for managing your skin condition.

If the headline of this article made you let out a huge sigh of relief, thinking “finally, someone gets me,” then this article is clearly for you. You may be one of the many people living with chronic spontaneous urticaria (CSU) or psoriasis who struggles to communicate the realities of life with skin disease with your doctor.

Before we get going, full disclosure: we are by no means criticizing physicians here. It’s actually the opposite. We recognize that dealing with skin disease is a challenge both for the people living with it and their doctors. And thankfully, there are many people living with skin disease that have great relationships with their doctors!

But explaining any disease to a doctor who isn’t living with that disease is quite frankly challenging no matter how great your relationship is. So let’s explore why…

The heart of the challenge

Some of the struggle could be rooted deeply in some of the very challenges of the disease itself. In the case of CSU, it frankly can be difficult to diagnose. So your journey with your doctor could very well have started with the frustrating but necessary process of diagnosis by default, where you continue to go in for test after test, crossing off a laundry list of allergies and other potential conditions, before you finally get your CSU diagnosis. Anyone who has been through that kind of saga knows that

But even when you’re diagnosed, a relationship with your doctor isn’t that simple. How many of you have struggled to explain to just about anyone that your psoriasis or CSU is more than just a rash or hives? Unless you’re living with a skin disease, it’s hard to understand that the physical manifestation of the disease is only one of the many challenges people face, even for your doctor.

When misunderstanding escalates

So what happens when you aren’t easily able to communicate to your doctor what life with skin disease is really like? You might feel like they just don’t seem to “get you,” or even worse, you feel like they don’t take you seriously.

For the most part, this all stems from miscommunication. Doctors can’t read minds, and if you feel like you need something more than what you’re getting, you have to take the lead. If your doctor tells you “let’s wait and see,” or “there’s not much you can do,” and you feel like that’s not good enough to put you at ease, you have every right to ask more questions.

Be curious and engaged. Do your own research. Let them know about any and all symptoms that occur outside of the appointment. Discuss any and all mental and emotional reactions you’re having as a result of your disease. Present it all to your doctor and ask them to talk you through it and provide help. After all, no one will be a bigger advocate for you than…well, you.

Quality of life matters

Now this bit is actually quite important. Some people with skin disease have convinced themselves that major disruptions in their lives are “normal.” That so long as they’re seeing an improvement in their physical symptoms, they’re doing everything they can to address their skin disease. So they don’t bring up these non-physical symptoms to their doctor.

That’s actually not true. If you’re only focusing on physical improvement, you may be ignoring other, equally important, symptoms. That’s where quality of life (QoL) comes in. QoL is exactly what it sounds like – it’s a measure of the quality of your life. Are you happy? Are you able to remain employed? Do you have an active social life? If the answer to any of these is no, and the culprit is your skin disease, it’s quite possible that the physical aspects of your disease are doing more harm than you thought. And your doctor can’t help you if they don’t know.

The bottom line is this: no one else, including your doctor, knows everything about your condition. Sometimes, even your biggest advocates won’t understand all of the symptoms or challenges you’re facing. It’s up to you to keep pushing forward and not get complacent. You should feel empowered to ask questions and get answers to all aspects of your disease.

Fight the good fight, and we’re here for you while you do.

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