Someone you love has just been dealt a tough blow. Maybe they find their diagnosis a bit of a relief after years spent looking for answers. Perhaps, their diagnosis came more of a surprise and suddenly, everything made sense. Either way, chances are, your loved one is feeling uncertain about their future, in need of support and understanding, and perhaps a bit of fear and anxiety.
As someone living with this disease, I am sure that I am hard to live with. I know that my husband struggles with seeing me in pain. That it hurts him to feel so helpless when it comes making me feel better. I know and he knows that he can’t take the pain away.
So, what can he do?
- Be patient with me- I know that living with me is not always easy. Sometimes I complain. Often it takes me much longer to complete tasks that used to take no time at all. Our plans may change at a moments notice if I feel my body can’t handle them. I know this takes a toll on his patience. Know that I am sorry. Help me make the most of it and please, have patience. Don’t take it personally.
- Understand the roller coaster- Living with psoriatic is filled with good days, bad days, and even inbetween days. Many days I feel frustrated with the roller coaster and I’m sure he does too. Try and learn to just roll with it, take advantage of the highs and be tolerant and patient with the lows. The uncertainty of each day can be hard, but it is part of living with this disease.
- Listen without judgement- This may in fact be the most difficult. It is natural for human beings to have opinions, to label things “right” and “wrong,” and unfortunately to judge others. In addition, it is my experience that it is for some unknown reason, in male DNA to try to “fix” everything. When I complain, I’m sure he wants to (in his mind) jump in and “fix” things by telling me everything that he feels I am doing wrong. He wants to tell me that I hurt because I’ve eaten the wrong foods. Or perhaps that I’m tired because I didn’t exercise. Maybe I should try a new lotion or shampoo to treat the aggravating psoriasis on my scalp. I know he is trying to be helpful, and that he doesn’t mean to imply the judgement that, “I’m doing it all wrong.” But that is how it feels. Simply listen to me, without judging me or offering advice. Offer empathy and understanding instead of judgement and suggestions.
- Let me feel sorry for myself without pitying me- There are days when I feel burdened by my psoriatic arthritis. When I feel like it is just too big of a mountain to climb. I feel down on myself and sorry for myself. I rant and rave. I am in pain and feel miserable. It is easy to pity me in this state. To see me weak and think that I am pitiful. Heck, I may even feel pitiful myself. But the look of pity in someone else’s eyes is too much for me to bear. I hate to be seen as weak, so please, don’t pity me.
- Help me to feel like an equal, like I have something to contribute to our relationship- There are days, I know, when I don’t pull my half of the weight in our relationship. Some days I’m not even sure I pull 5 or even 10 percent. Relationships are a two-way street, and I need to feel like I am able to contribute something valuable to our family. This disease has limited my income potential. The fatigue and pain keep me from doing my share of the laundry, dishes, and housework. But that doesn’t make me less. That doesn’t mean that I have nothing to contribute to my family. My contribution may not be tangible in the form of money or clean laundry, but I have value and worth.
Sure, there are other, more practical things that can be done to help a loved one living with PsA. However, none of those will be of value without securing the value of emotional stability. So simply this, being emotionally supportive is really where we all should begin.