Common Issues When Discussing Psoriasis

When friends and family understand how psoriasis affects you, they are better able to offer you support, but they first need your help in understanding your condition. Psoriasis flare-ups are not always obvious to others, and a loved one may not know if you are experiencing a flare-up of symptoms, especially if plaques are in areas covered with clothing. They may not know if you take medications that alter the function of your immune system, or how psoriasis affects your immune system. It is up to you to open up about your disease and give loved ones an opportunity to understand what you're going through.

Here are five common issues that affect communication when talking about psoriasis and what you can say to limit the extent of these barriers.

General Strategies

A study report in 2014 in the Journal of the American Academy of Dermatology looked at the burden psoriasis placed on people living with the disease and their loved ones. The researchers found that 90% of those with psoriasis felt it impacted their own quality of life as well as the quality of life of their loved ones.

Living with psoriasis, you need all the support you can get, but your loved ones may not know what you want or need from them—and not knowing can be stressful for them, too. But because psoriasis can feel like a personal matter, it may be difficult to figure out how to start talking about it.

Here are some tips to help you explain psoriasis to family and friends.

Wait Until You're Ready

If you're starting the conversation, it is up to you to decide when to talk about psoriasis. You may want to talk about it as quickly as possible or you may want to build some trust with people before you talk to them. Whenever you decide the time is right, it is a good idea to be prepared, open, and honest.

Be Informed

Get yourself familiar with the most important facts about psoriasis and the latest developments on treatment and care so you are able to talk to your loved ones and answer any questions they may have. You may consider sharing an article or a website on psoriasis after you've finished telling them about it in your own words.

Be Honest and Calm

You will have times where psoriasis symptoms will be worse. Discuss with your loved one what these periods look like and what helps you to feel better. You'll want to keep an open mind to avoid misunderstandings. Express concerns clearly and honestly while being considerate of your loved one’s questions and concerns, too.

Be Specific

If you are asking for help, be as specific as possible. It is your responsibility to communicate your health concerns and needs. You can suggest ways they can help. Maybe your partner can cook a meal when you are not feeling well, help with housework, or pick up prescriptions for you. Or maybe your sibling or parent can be a shoulder to lean on when you are feeling run down physically or emotionally.

Let your loved one know what your limitations are, so they know upfront if you may have to cancel plans, are unable to follow through on something, or just simply need help.

Be an Active Listener

Even though you know better than anyone what you need, it is still important to include your loved one in the process. That way you are acknowledging the two of you are a team. Ask questions such as, “What do you think?” or “How do you feel about this?” Working as a team, you will be able to find additional solutions you would not have figured out alone.

Get Serious

You can set a good example and encourage loved ones by showing them you are serious about your health needs. For example, make sure you are meeting with your doctor several times a year, following your treatment plan, and managing stress. It is helpful for them to know you are doing everything you can to stay healthy and feeling well and it encourages them to step up when needed.

Addressing Assumptions

Assumptions about psoriasis can bring about frustration, which is why many people downplay how psoriasis affects them. One of the biggest assumptions is that psoriasis is similar to eczema, a condition that makes skin red and itchy.

Psoriasis and eczema are both related to altered immune function, and they both involve an overactive immune system. However, there are differences between these two conditions, including how they are treated and managed.

Another assumption—and misconception—about psoriasis is that it is contagious. Once people can get past that assumption, it becomes easier to help friends and family understand.

If an assumption comes up during your conversation, address it with straightforward facts and no judgment.

Deciding What to Say

Opening up to loved ones about your health and struggles with psoriasis isn’t going to be easy. Finding the right words can be hard, especially with all the medical terminology related to psoriasis. And while it is easy to tell someone the name of a condition, a name explains nothing about what is behind the condition. Even directing someone where to look for information doesn't explain how a disease specifically affects you.

There is also the difficulty in striking a balance in how much you should share about psoriasis. The National Psoriasis Foundation recommends being selective when it comes to who you talk to and how much you want to share. After all, living with a health condition can make a person feel different and as if loved ones view you as fragile or needy. You may also worry you may scare people off when going too much into detail.

While these are all valid concerns, your loved one will need to know in advance how to handle situations where you may need support and medical attention. While it is your decision to decide how much you want to share with friends and family, make sure you feel confident that what you have shared is enough should a difficult flare or medical event occur.

Anticipating Reactions

Another problem when trying to open up to people is knowing that you cannot control their reactions. People may overreact—either they will treat you as if you are fragile or act as if changing your attitude or diet, or trying whatever remedy, will resolve your symptoms. These reactions can cause you to feel even more ashamed about living with psoriasis. Additionally, there may be people in your life who will not be able to handle this type of information and may respond with hurtful comments, disbelief, or by avoiding you.

For whatever reason, some people need to see something to believe it, and people with psoriasis become good at masking health problems because they are tired of hearing things like, "But you don’t look sick.” Some people may even try to relate by telling you they understand because they had a rash or a non-autoimmune skin condition. Others may downplay your symptoms by saying things such as, “Well, at least you’re not dying,” or “You shouldn’t make such a fuss about your health.”

When people respond with prejudice, it is usually based on misinformation, misunderstanding, and even stereotypes. And, while you cannot control the responses of others, you can decide how to respond. Decide whether you want to let them know how you feel, and address their thinking with facts where possible.

Fear of Rejection

Having the support of loved ones is something every single person with psoriasis wants, and there is nothing worse than being told or made to feel like you are faking an illness. But don't let these fears stop you from speaking up.

And yes, there will be people in your life whose love and support you may not get—and unfortunately some may even be closest to you and/or the ones you thought you could rely on. But when all else fails, having just one person who supports you, educates themselves about psoriasis and your medical options, and who steps up to help when needed, is a blessing.

You are allowed to feel heartbroken over people's past responses. You also get to decide whether you can give people another opportunity to step up.

Unhelpful and Unsolicited Advice

Revealing your challenges with psoriasis can be difficult, especially when family, friends, and even strangers want to offer medical advice on subjects they know nothing about. It is hard for others to understand you are not just accepting your fate. They don’t always understand you have done your research on the latest treatments and seen a variety of doctors. People just don’t understand you are the expert on your particular experience with psoriasis.

So, what can you do when you are trying to communicate about psoriasis to a loved one, and they start to suggest a diet, drug, or supplement they hear about? One way to handle unsolicited advice is to thank the person without addressing the advice they have given, so as to avoid engaging in further dialogue about that information. Another approach might be to simply tell the person that you are in the hands of good doctors and you are happy with how they are treating your condition.

A Word From Verywell

While keeping the effects psoriasis has on you to yourself might be easier at first, in the long run this may backfire and cause you feelings of embarrassment or shame. And you shouldn’t have to feel that way, especially when you need people around that love and care for you. The disease is unpredictable, and you may try different treatments to find one that works for you. You will need support and kind words from your loved ones to make it easier to cope. Don’t let common communication barriers get in your way.