November marks the month of bringing this illness to life. Letting it be the star of the show, showing people just how ‘great’ Pulmonary Hypertension is.
Pulmonary hypertension might be an invisible illness, but it isn’t invisible to me. Lately I’ve been reminded of how serious my illness really is. This year alone we have lost about 6 patients, that I know of, to Pulmonary Hypertension. Some that are part of the South African PH Association that I got meet in person and others that I discovered on social media. It’s gut wrenching to see that message that we have lost yet another person to PH. A little part of me dies inside. Every. Single. Time.
I see myself as lucky though. I’m one of those few patients that has actually gotten better in terms of medication. From taking 8 pills a day now down to 2. It’s truly amazing but it’s not to say I didn’t fight my way to get here. It was hard but I’m grateful that I can live a ‘normal’ life.
I feel frustrated at times by the changes in my body. Even after 12 years, there has been ‘new-limitations’ to deal with. Something as simple as storing linen on the top shelf has gotten me a little out of breath to say the least it’s so discouraging.
Even though my disease is invisible, I feel how it isolates me from friends and family. Many times I have declined invitations to parties because of the smoke and the fact that there will be a lot of people around. ‘Perks’ about having this illness is that it comes with PTSD and anxiety. I had suffered a syncopal episode at a function and since then I have developed a serious fear that it will happen every time. I’ve also watched a lot of people in my life become fair-weather friends after my diagnosis too. All part of the package though right?
Every day, I am reminded of what it means to live with pulmonary hypertension, and the physical limitations it has placed on my body. Some days are better than others, but living with a progressive and incurable heart-lung disease is still a heavy burden.
Even if you can’t see it, I know what it feels like to live with pulmonary hypertension. I’ve felt it every single day for the past 12 years.
Let us be more aware and help those that suffer from invisible diseases!