Living with a rare disease is difficult for so many reasons. One of the lesser talked about struggles of living with a rare condition is the fact that so few people understand what it’s like to live in your shoes. This article discusses 12 misconceptions of porphyria which make it just that much more difficult to live with the condition.

Porphyria

Porphyria has many subtypes but all are characterized by terrible pain.

Patients explain that although they have absolutely no desire for anyone else to experience the pain they face, they do wish there were a way to help others understand how it feels and how it can affect every day of their lives.

One patient diagnosed with acute intermittent porphyria (AIP) explains how she wishes her partner could live just a few moments in her body. But she explains that even if this were possible, he wouldn’t get the full picture. Those few moments wouldn’t account for the years of pain, the extensive emotional and mental energy, the lifetime of medical trauma, and the constant need to avoid triggers.

Misconceptions

Although many patients explain how their loved ones try to understand, many misconceptions still exist.

For Porphyria Awareness Week, Claire Richmond asked other patients to explain what misconceptions they face from friends and family.

1. The first misconception is that pain is always visible. This simply isn’t true. Often there’s no rash, but the pain is there. Without a visual, it seems to be harder for people to understand.
2. The second misconception is that porphyria is a simple heat rash. It’s not the same as a normal heat rash and saying that it is diminishes what these patients experience.
3. Thirdly, people think it’s just a sunburn. Again, this just minimizes the true extent of pain that patients face.
4. Fourth, people say that diet and exercise is a cure. If only this were true.
5. Fifth, there’s a treatment that will cure porphyria and patient’s lives can go back to normal. Unfortunately, a cure has yet to be discovered.
6. The sixth misconception is that patients exaggerate the pain. One AIP patient explains how her friends think she complains more than the pain would warrant. They just don’t understand.
7. Seventh, people think that porphyria patients are just out of shape. In reality, the condition causes weakness and pain that makes exercise hard.
8. Eighth, the illness is exaggerated. People either don’t think porphyria is real or they don’t talk about it like it is.
9. The ninth misconception is that people facing porphyria are unreliable people. Although the pain of the condition may cause them to need to cancel plans sometimes, patients are not just generally unreliable people. Further, they wish they could always be in control and say yes whenever they want to.
10. A tenth misconception is that patients are sick all the time. Really, its intermittent. But people can’t seem to grasp that you can feel more poorly one day than another.
11. That porphyria is easy to manage is another misconception. The symptoms are chronic and although patients DO manage them, that doesn’t mean its easy.
12. Finally, people believe this condition only affects people physically. Really, its a mental battle as well and if people were more understanding of this, it’d be easier to handle.

Although facing misconceptions like these is difficult, knowing that there are others with the same exact condition, that know exactly what you’re going through, can make navigating these misconceptions a bit easier. Even though your condition is rare, you’re never really alone.

You can read more about this take on porphyria misconceptions here.