Hi all, so today I’m going to posting the first piece of writing that I had published on The Mighty, and the first time that I went public on my facebook with how I’ve been doing and what a terrible struggle the last year has been. Sure some of you can relate….
An open letter to my boyfriend on how he can help me face my ongoing battle with psoriatic arthritis….
When we met, I was the life and soul of the party. A young woman in her dream career. I loved you from the moment I met you. Over the next 4 years we had some amazing times. We travelled, we had adventures, we grew together. You supported me and my addiction to running and you drove me across the country to take part in races. We had our whole lives ahead of us. Until that one morning when I woke up and I had a pain in my toe so severe I couldn’t walk. Over the next few weeks the pain got worse. All of my joints below my hips rapidly began to swell. I was signed off work. I couldn’t stop crying.
Psoriatic arthritis they said.
I want to thank you for all that you have done, and continue to do for me, but also to tell you the areas that I need a little more help and understanding.
You have remained loyally by my side, throughout the bad moments, the terrible moments, and the occasional not so bad moments. You are patient with me. But sometimes I need you to be a little bit more patient. I can’t walk as fast as I used to, and I feel a little left behind when you forget this and walk ahead, innocently forgetting that I can no longer keep up. You understand that sometimes I don’t have the strength to get out of bed. So you cover the bed in blankets and cuddly toys, and we stay in bed watching movies. But I need you to understand that sometimes I don’t even have the emotional strength to tell you how I’m feeling. That even talking feels too much. As much as I love you, and value your support more than you can imagine, I need you to stop asking me what you can do to help when I’m in my lowest moments. Not because you can’t help, but because sometimes the best help you can offer me is just to let me cry it out. I don’t always have the words to explain how I feel. Thank you for still making sure that I enjoy life. But please understand that the chronic fatigue I feel afterwards can leave me out of action for the next few days, even weeks.
Most importantly, I need you to keep talking about my condition and our joint relationship with it, because I believe it gives hope to others who may find themselves in a similar situation. That love can survive arthritis. That love can thrive with arthritis. That our relationship has become unbreakable because of arthritis. To tell other people that there are men and women out there who see past the creaking joints and the painful nights. Who will love and support you regardless. Who will even love you enough to help you clip your psoriatic toenails!!
My arthritis has become your burden to bear as much as mine. Let’s continue to walk on our journey together (slowly!) and see where it takes us….