Marriage is not always sunshine and roses. When you or your partner has psoriasis, marriage becomes more complicated. This Valentine’s Day, we share the story of Helen and Tony. Married for almost 30 years and with 3 girls, Tony’s psoriasis emerged a few months before meeting Helen. The couple tell us about the havoc the skin condition wreaked on their marriage, and their joint struggle to cope while bringing up their girls.
Through this interview, we hope to give you their insights on holding your marriage together when one of you is struggling with psoriasis.
1. How did you first meet?
Tony:
Helen and I actually met through her brother who studied chemical engineering at UNSW with me… way back in the day. He and I had gone to a party, and she had come to drive him home. I needed a lift, and I didn’t live far away from them, so I was lucky enough to get a ride with her. Not going to lie, she was (and still is) a very good-looking lady. Come to think of it… I think she was dating someone at the time, so I didn’t try anything.
Helen:
(laughs) That’s not far from the truth! He was actually a good friend of my brother’s, which was a bonus. And let’s not forget about the colourful joke Tony told my parents ‘because he was never going to see them again’.
2. Had you been diagnosed with psoriasis when you started dating Helen? When and how did you tell her about it?
Tony:
I knew I had a skin disease when I first met Helen. But I didn’t know what it was. I wasn’t really worried, I knew it wasn’t contagious and it didn’t really bother me at the time. At times it did make intimacy hard because I felt like I had to hide it from her… at least at first. I just tried to get to know her as a person, without getting physical. When the relationship got a bit more serious, I had to show her my psoriasis. At the time I didn’t know it was psoriasis, but it didn’t seem to worry Helen, and at the time it wasn’t very extensive… it was basically on my elbows, knees, and my belly button. It hadn’t got really bad yet. Even at that age I was still a bit self-conscious… it can be quite disfiguring. I probably thought it was bigger than it was.
3. What did you first think when Tony told you he had psoriasis?
Helen:
The look of it didn’t really bother me because I went to school with a girl who had extensive eczema and you learn empathy when faced with someone struggling with skin problems especially as teenagers. I knew that it wasn’t contagious, so as far as I was concerned it wasn’t a problem (for us). Little did I realise the toll it was going to take on Tony’s psyche as the psoriasis took hold.
4. You’ve been married for 27 years. Do you feel it has affected your marriage? If so, how?
Tony:
It definitely put a strain on my marriage. I went through a lot of pain. It wasn’t just physical pain… but mental pain too. Psoriasis is not a death sentence, but it is not treated seriously by the medical community (at least in my experience). I was in constant pain to the point where there were nights that I couldn’t sleep… and it affected how I related to people- my wife, my girls, and my friends. I tried not to complain about it too much to them, and I pretty much shut them out. I turned to drinking to deal with the pain and the depression. There were times when I didn’t consider my family at all. It’s not an excuse… but that’s what chronic pain does to you.
Helen:
I have always viewed health issues as something you need to manage as a family - whether it is something affecting your kids, your partner, or your aging parents- we all have challenges that we need to work through together. I have always been very empathetic and made a point of looking after and supporting those in pain. I don’t know how I came to fall into this role, but Tony’s psoriasis was just something else I put in my basket of things I had to deal with. In terms of viewing it as a disruption to the marriage, it didn’t cross my mind. It was more something that we worked on as a team to find a solution. Tony tried everything the doctors and pharmacists had to offer but nothing worked, so we had to keep looking. It was one disappointment after another for him, which was very hard to watch. I think once he had exhausted all treatments available from the pharmacies, he lost hope. I remember it got really bad and I had to take him to work in a wheelchair. He was terrified about getting psoriatic arthritis. So, when he was diagnosed with gout you’ve no idea how relieved he was.
5. What’s the hardest thing about living with psoriasis?
Tony:
The biggest problem for me, before I got things under control was the pain… especially going to work in pain would just make it impossible to concentrate. It was also hard because the treatments were expensive and we were never sure whether they would even work. At times, it was hard to have hope that things would get better. When it got really bad, I felt that there was no point talking to people about my worries because I honestly didn’t think they would be interested in hearing about it. In hindsight, I should have been more open with people, including my wife.
Helen:
I think for me, the hardest thing has been having to rely on medical professionals for Tony’s care, especially when the options offered to him made him feel even less attractive - the coal tar and hemp oil discoloured his clothing and were very smelly, and the UV light therapy and the daily Celebrex, which could have done serious damage to his health.
Tony:
Yeah… going through the treatments was exhausting… for both of us. Disappointment after disappointment. Other than that, it was the constant reminder to everyone that I have it. When it was at its worst, I tried to hide it as much as possible. I thought it made me unattractive and felt like people were repulsed by me and my skin.
6. Did your relationship change when the psoriasis was under control? If yes, how did it change?
Tony:
Absolutely it did. I think for me, it was about making an effort to get it under control for the sake of my marriage. I believe you’ve got to take some ownership of it… be responsible for it, look after yourself. Once I started to get it under control I had more of a clear head and could address my drinking problem and the cracks in my marriage. I was more attentive to my wife and my girls because I was finally looking after myself and felt good about who I was. For me, getting my psoriasis under control brought my family back together.
Helen:
I agree. For me the big thing was that I no longer had to feel for him and his pain. I knew that he liked not having to feel ashamed about blood on the sheets or flakes of skin on the floor around the bed, or the discoloured sheets and clothes that smelt of tar or hemp oil. I had always got on and cleaned up whatever was there- without drawing attention to it. Last year when we were getting ski gear ready, we both laughed when I shook out his ski pants and it was a snowstorm. It served to remind us what we no longer have to worry about. It is always good to reflect and have gratitude. The lack of pain and bloody cracked limbs is the biggest change for me. He is a lot more carefree and going to the beach with red spots doesn’t deter him the same way as spots accompanied by pain did. The pain just made everything that little bit too hard sometimes. He wears short sleeved shirts too now- presumably because the pain that reminded him about his plaques is no longer there. It’s wonderful!
7. What advice would you give a partner living with someone who has psoriasis?
Helen: Be compassionate. It’s a horrible condition.
8. What is the most important thing you want people to know about being in a relationship and having psoriasis?
Tony:
Be mindful of the person you’re with, because if you’re suffering, they’re probably suffering too. I went through my ups-and-downs and I probably drank too much and shut out my family. I think the biggest thing for me was recognising that it wasn’t all about me and my psoriasis. Yes, I was suffering… but I was damaging my relationships in the process. Take ownership, try everything, get counselling if you need it, but be there for your family. There’s more to life than your psoriasis.
Helen:
Yes, absolutely… and over the years I took on a lot of the emotional burden… it isn’t just the one who has it that suffers. What it comes down to really is that society indoctrinates us into thinking of our bodies as either beautiful or ugly, fat, or thin, old or young. I think body image causes angst for a lot of people because it is a reflection of how we see ourselves and causes us to worry about how others see us. Having psoriasis is just another issue to add to that list. I believe if we treat our bodies with respect and mindfully manage what we can control, then we won’t care as much about what others think of our appearance. For those with psoriasis, as long the pain isn’t there, you should hold your heads high and do the things that bring you joy. That way the psoriasis will just be another wrinkle in the aging process. After all, love isn’t just skin deep.
Yes, absolutely… and over the years I took on a lot of the emotional burden… it isn’t just the one who has it that suffers. What it comes down to really is that society indoctrinates us into thinking of our bodies as either beautiful or ugly, fat, or thin, old or young. I think body image causes angst for a lot of people because it is a reflection of how we see ourselves and causes us to worry about how others see us. Having psoriasis is just another issue to add to that list. I believe if we treat our bodies with respect and mindfully manage what we can control, then we won’t care as much about what others think of our appearance. For those with psoriasis, as long the pain isn’t there, you should hold your heads high and do the things that bring you joy. That way the psoriasis will just be another wrinkle in the aging process. After all, love isn’t just skin deep.
Give yourself or your partner the gift of relief from psoriasis! To celebrate this Valentine’s Day, Abundant Natural Health is giving away four (4) bundles of our Ocean Soothe® Psoriasis Gel and Lotion and Abundant Element - Skin to help you heal from the inside out.
To enter, join one of the Facebook groups ‘Overcoming Psoriasis’ or ‘Overcoming Psoriasis Australia’ and tell us your psoriasis love story in the comments section of this post. There will be two (2) winners selected from each page.