I would like to be not sick already? I miss my daily walks. I felt the difference in both my physical health and mental heath improve markedly with a 45-60min daily walk. But then I hurt my knee at futsal. And now I feel like balls due to a cold/flu. Go away, let me exercise.
Dear all, this is a long post, written with my amazing boyfriend in mind. He recently (I have very little psoriasis at the moment, but he’s been with me when things have been bad) let me know that it can be very frustrating as a partner or loved-one to try and help, so here is a post about ways you can offer your support.
Let’s start off with the most important thing: We all know everyone is different. Therefore, it should go without saying (but I’m going to remind you anyway) that different things work for different people. Please ask the psoriasis patient in your life how they’re feeling first, then proceed to ask them whether one of the following would help them.
Further - if they don’t honestly know, try one of these things, then discuss the outcome. Did it help? Great! Keep it in mind for next time. Did it really not help, or make things worse? Fine - remember that, note it down, and don’t do it again. Keep trying, you’ll find something (that is probably not even on this list) that will work.
The very basics
- Learn all you can about the disease. We like it when you show you’re making an effort.
- Be present in their experience - i.e. if you can’t go to their doctors visits with them, at the very least know when they’re going and follow up with them afterwards. Show interest, want to support them.
- Discuss with them their experiences and feelings, don’t ever assume you know what they feel, and try to understand that they can’t help feeling the way they do - telling them (or any person, for that matter) they shouldn’t feel a certain way is very dangerous, and will only make them isolate themselves further, because they see their feelings as being trivialised, and dismissed as wrong.
- Psoriasis is commonly coupled with depression, so learning all about depression and how to help someone who is depressed is beneficial.
While in public
Ask if they’re okay - discreetly. Remember that, generally, they could be feeling:
- uncomfortable (both physically and mentally)
- overly hot
- the physical sensation is similar to really terrible sunburn
- it can be quite draining so they may just feel worn out
- possibly really stressed, even as far as having an anxiety or panic attack.
If they’re not okay, or you feel they might not be answering truthfully (don’t accuse them of lying though, for heaven’s sake!), ask them what they might want to do. If they don’t know, good suggestions are anything that will help relieve stress. For example:
- “Would you like to get some fresh air?”
- “Would you like to leave?”
- “Would you like to go home?”
- “Would you like a drink?”
- “Would you like me to talk about something to get your mind off it?”
- “Would you like to play a game to get your mind off it?” (this works better if you already have a public game like car cricket or something lined up)
- “Would you like me to take your bag?” (or anything they might be holding)
- “Would you like me to do [whatever task might be helpful] for you?” (e.g. driving, picking stuff up etc)
When in private (i.e. at home)
Again, ask if they’re okay, and then whether there is anything you can do for them. As usual, you’re looking at stress relief. Options include, but are not limited to:
- putting on a movie (something entertaining but probably not a drama or anything very emotional)
- putting on some music
- putting on some calming music then meditating in some form with them (breathing exercises etc.)
- if they’re not in pain, physical contact is good - i.e. if they have lesions everywhere, do not touch them, at all. However, for instance, if their hands are fine, hold their hand/s.
- running a lukewarm bath with some sort of oil-based (but fragrance and soap free) additive for them, to help soothe
- helping with any of their medicinal or moisturising application
- letting them rest or sleep
- helping with any chores
- keeping the place stress-free! i.e. if they prefer a clean place, keep it clean. If there’s too much noise, try and remove as much as possible. Dim the lights (or turn them on, whichever they find more comforting). If it’s your partner and you have children, keep the kids occupied while your partner rests or meditates. Add a scent they find soothes them.
- if they’re up for it, go for a 15-30 minute walk with them. Exercise is always good, but;
- do not pester them to exercise any more than this, or to do any strenuous exercise if their lesions are bad - this can be very bad for their skin, as it can cause the following possible effects: overheating, clothes rubbing non-affected skin (or scratches, etc) causing new lesions, or breakages of existing lesions leading to bleeding. Swimming is good but psoriasis patients already usually suffer from low self-esteem and are unlikely to go to a public pool or beach, so this is only really an option if you have your own pool.
- making them a cup of tea or a drink or even some (healthy yet tasty!) food
- playing a game, doing a puzzle, any other hobbies they might like
- stopping a crying session is important. As far as I’m aware, girls are far more prone to these emotional outbreaks (just a societal construct where girls are allowed to cry. Maybe boys get angry instead? Let me know!). Crying doesn’t help us because we usually heat up, increasing our discomfort. A glass of cool water and a small snack will bring all the blood back where it’s needed (the digestive organs) instead of further towards the surface (skin and muscles; for the flight/fight response). Encourage us to do something or talk about something to focus outside ourselves in these times.
Sometimes, depending on the person, we just want to be alone. Or we just want some peace and quiet. Maybe we just want you to sit next to us so we know you’re there, but there’s nothing else we want you to do. Ask, suggest if we’re not helpful, and be patient.
And finally, and most importantly:
Look after yourself. This will prevent you burning out. Looking after someone with any disease requires energy. You do not have an infinite amount. If you’re finding the person you’re supporting requires more energy than you realistically can output, ask for help yourself. Call a friend or family member, let them know they are needed too. See a councillor or psych or someone that you can let off steam to. Let yourself rest. You can’t help someone if you’re not okay yourself.