Sharing and communicating about psoriasis

friends in park talking about psoriasis

This content reflects the views of the individual blogger and is not intended to advise you about your health. Always seek advice from your doctor or other qualified healthcare professionals.

Have you ever struggled to talk about your psoriasis or felt no one would understand exactly what you’re going through? You’re not alone.

I am going to highlight the positive impacts of honestly voicing your concerns and sharing your specific experiences with others.

Whether you have a newly formed patch lurking somewhere on your body or you are covered scalp to sole in guttate or plaque psoriasis, I find that it can feel very lonely during a flare. The overwhelming feeling of isolation can be tough but it is so important to remember you are not alone. People all over the world are going through the same thing. In this country psoriasis impacts around 1.8 million people in the UK and 73,000 in Ireland. You may have people in your family or close circle who are affected by a skin condition; if you are able to share your worries and open up to them about your psoriasis you probably know how good it feels to have a chat or to ask for advice from someone who’s been through it too. However, some people find it difficult to open up so if that sounds like your experience, this post is for you. Whether you are recently diagnosed or your psoriasis has played a major part in your life there will be conversations you may have to navigate with key people in your life to discuss the impact psoriasis has on your health and on your life in general.

I am hoping to give you a few tips to help you speak to others about your psoriasis.

Online Community

We are lucky to live in a technological age where you can find valid, reliable research at the click of a button and a whole host of online people sharing information about psoriasis; from dermatologists, doctors, qualified nutritionists, verified pharmaceutical companies and even fellow psoriasis warriors themselves. A quick search and you will find others sharing their experiences, communicating with each other and spreading awareness to the wider world about this complex and sometimes debilitating condition. Location, age and health providers are just some of the factors which may set you apart from others and play a part in feeling isolated on your psoriasis journey. A quick look online on some of the major social media platforms and you will likely find a psoriasis community and perhaps even people of a similar age or from your country to connect with. Online there should be no pressure for you to share your story or post photographs of your psoriasis. Simply following the journey of other warriors can leave you feeling connected and part of something much bigger.

Loved Ones

When speaking to family or friends, the two key things to remember are be honest and be specific. This will help them understand how you are feeling and maybe give them a clearer idea of how best to support you. Are you a serial “I’m fine” offender when asked how you are feeling, or do you give a generic answer like “Sorry, my psoriasis is playing up” followed by an eye roll? Stop! Know when people are genuinely reaching out to you, embrace the support you deserve and stop apologising for your health. Firstly non-sufferers may not fully understand the complexities and burdens a flare can bring, to them it could be the equivalent of you telling them you have a bout of hiccups - temporary and time will help. Instead of being vague, be honest and specific. Instead of ‘fine’ try, “My psoriasis has flared, it’s really itchy especially at night, I didn’t sleep a wink so I am taking a little longer to do things this morning.” Don’t think of it as being negative, because there will be plenty time to be positive when your skin is better and you can be honest and specific about that too. “My psoriasis is clearer at the moment so I’m wearing this top I forgot all about and I’m getting to do lots of things I had put off.” If you allow your vulnerabilities to show there is more chance of the person replying with kindness, lending a comforting word with a hug or a smile and being there for you rather than judge you. Being specific about how it affects your sleep, your mood, your relationship, your job or however it personally affects you, this gives others a better sense of what you are going through.

Your Partner

Sharing your fears and worries with an intimate partner may be different to how you communicate with your family. Your may be more focussed on appearance or the texture of your skin to someone’s touch. If you haven’t been intimate yet perhaps starting a conversation about your skin and showing them a photograph of your psoriasis during a flare may alleviate your fears and won’t feel as intimidating for you. The key theme is being honest but if someone has chosen to be with you, remind yourself they have chosen to be with you for a reason, you are so much more than your skin. A partner can also help in other ways. Discuss practical ways they can support you; like running you baths that are not too hot, having your favourite snacks on hand during flare, stocking up on your favourite emollient or talking about expectations regarding nights out and going to events.

At Work

You may find that your psoriasis has an impact on your job or on a specific aspect of it at least. Speaking to your boss, or colleagues you trust, openly and being as specific as you professionally can may make them aware of what you are dealing with and help them to better support you. Similarly when speaking to a partner, discussing practical adjustments or reasonable expectations in the workplace means you are not landing them with a problem, you are offering solutions in order to make you a more efficient employee. Explaining that psoriasis is a chronic immune-mediated condition with varying levels of severity which uniquely affects individuals is more honest and specific than “it’s just a skin thing”. If you feel comfortable speak to HR or if you have a mental health champion in your workplace ask to talk to them and make the most of the support available to you.

They mean well…

 

The more you share with others the more you will be inundated with suggestions of remedies and quick fixes. Well-meaning friends and colleagues with your best interests at heart. A good tactic is to acknowledge, agree and avert attention. This tactic does not mean you are going to do anything they have said but acknowledge their support and thank them, agree you would like to find something that works for you and you are currently under the guidance of and then avert attention away from you by changing the subject or asking them a question to put the focus back on them.

 

Medical Provider

One individual you must speak to about your psoriasis is your GP or your dermatologist. For this communication I always find it easier to write things down or have a list in my notes app so as not to waste time or come out feeling you missed something. During a particularly bad flare you may want to be as thorough as keeping a diary or updating your phone calendar with any significant changes to your psoriasis. By being prepared you know what you would like to discuss, you don’t waste the limited time you have and there is more time for examinations and to discuss treatment.

Be honest and specific

In all these conversations the key theme is to be honest and specific. There is an element of acceptance in being honest with yourself about your limitations and acknowledging things in your life which serve and support your wellbeing and the things you can live without or avoid. Just remember you are not alone and there is always someone out there for you to talk to.

Article developed in partnership with LEO Pharma.

MAT-33836 Date of Prep: April 2020

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