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How Have You Helped Others Living With A Rare Disease That Is Not PH?
I feel like over the years I haven’t just banned together with PHer’s, but also with people battling other rare diseases. We all share what it’s like to advocate, spread awareness and live with a disease that many people, including medical professionals, have little understanding about.
My experience with PH has made me more compassionate for the struggles of others, whatever they may be. I try to encourage those battling rare disease to speak up and never give up.
How have you helped others battling a rare disease other than PH?
*Remember that Rare Disease Day is February 29th
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7 Replies
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Hi Colleen,
Really good topic. I have definitely reached out to other rare disease communities and have found that we really have so much in common with one another even if we are living with such different conditions. I really found this in my trip to Philly with some of the other advocates for BioNews. It was just incredible that all of us have such different diseases yet all have a lot of the same emotions, difficulties, triumphs, etc. We share so much which is why more people from other rare disease platforms need to come together. We have so much to offer each other and the rest of the world.
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I have reached out to people with rare and no so rare diseases. I know what it is like to be stared at, whispered about behind your back and being bullied. I know that sometimes we all need encouragement, a kind word, a look that says” I am walking on this journey with you, you are not alone”
I remember during the initial “aids” scare, when I walked into
my office at a Fortune 500, and some cruel, evil Adults(?), has moved a o workers desk into a corner and refused to sit near them. This co worker had been a part of their office click for years. That day , I chose to put my fear aside and to befriend them.It is hard to tell who is suffering behind a closed door and we never know when we could become a casualty. When Kim has “lupus” kids and adults avoided
because it was rare and there was no cure -
Hi Jimi,
Some people are just so uneducated when it comes to illness and they think that everything is going to be the next attack of the plague and just stay far away. But, being distanced from others and seeing the distance that some people create because of ignorance just makes things even worse for us living with the disease. I feel like we feel bad enough already. That is great that you are reaching out to EVERYONE and all the people that you can touch with your kindness and empathy. That makes a difference and kindness matters. Like you said, you never know who needs it the most.
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@brittany-foster and @jimi you both make excellent points. What I have learned over the years is that watching a loved one struggle with their health has enhanced my compassion for all. When someone posts about their disease to social media I make a point of reading and responding, even if it’s not PH related. I’ve had friends contact me who were frightened and struggling with their health because they recognized that although our diagnosis is different, the experience is similar in many ways.
Jimi, I commend you for not turning your back on your co-worker. It’s sad to witness how cruel people can sometimes be to one another.
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Yay to all of you!
I have a very close friend with Dercum’s. Another, bff from grad school, has a neuro something rare (can’t remember name but I learned tons from her about dealing with not looking sick). My favorite cousin had a possibly rare clustering of multiple not so rare conditions — polio as a child, asthma, multiple sclerosis, post-polio syndrome and breast cancer (radiation not an option because of the MS).
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@vanessavaile I am so sorry to hear about all of your loved ones who are dealing with chronic illness (whether rare or not). I am sure that they are so happy to have your support and understanding through it all. I find that people that have “gone through stuff” themselves always have the MOST to offer to those that are hurting.
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@vanessavaile it’s heartbreaking how much suffering is all around us and how little people take notice. Hopefully we are setting an example to others when they see us reach out with compassion to someone outside our personal disease community. I’m sorry you have so many loved ones facing various battles. I’ve experienced watching friends and family face disease and worrisome health issues and my heart bleeds for them because I know what it’s like.
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