Chronic Illness Is Not a Race to See 'Who Is Sicker'
Why is it a race to see who is sicker? Do I need to validate my position by being sicker than someone? Are you really in a race to know you are sicker than others? The chronic illness community seems to have a problem with understanding that there will always be someone sicker and we don’t gain validation by being sicker and making it known, but rather by our voice and our actions.
I am not exempt. I do it. I find myself saying I have had four open heart surgeries. Like that is a qualifier for me from knowing or not knowing something. I know patients who have been through less with more validity and knowledge in the community than me and some who have had many more surgeries than myself with very little knowledge.
Our sickness doesn’t equate to our knowledge; the same goes for parents of chronically ill children. Our understanding first comes from our personalities and desire to know everything we can, no matter if it is our child or us.
Sometimes being more complex will force us to learn more, but this is not always the case. I wish our medical history didn’t have to preface our responses. I have seen patients or parents who get bitter because they seem not to relate to someone else because they or their child is sicker and they want to prove it. I get that your kid is sick. But are we racing? I know there will always be someone with more issues than me. But do I need to prove it?
I wish we could all embrace each other for everything that makes us the same – not what makes us different. Instead of racing to pass judgment on someone and tell them how sick you are, race to be a shoulder to lean on. Let them feel your compassion, not your comparison. Be the one to save their day. Not the one who drags it down.
We want to hear your story. Become a Mighty contributor here.
Joe was born with a congenital heart defect called Tetralogy of Fallot. He required his first open-heart surgery at 54 hours old and suffered a stroke after surgery. He has now had four open-heart surgeries, the last two days before his 30th birthday. He has struggled with anxiety for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care.
joe_valente