A different kind of mourning
Have you ever stopped to think about how people who get into an accident are given time to mourn their losses yet people who are diagnosed with a genetic condition or other health ailment are usually not.
This baffles me.....
Getting into an accident and losing abilities is hard. I know people who have been perfectly healthy one day, get in an accident, and never walk again. This is tragic!
They spent months in the hospital. Even more months in rehab all the while working with a therapist to help their mental state and dealing with such a profound loss. They were loved on, held, and supported by nurses and social workers ready to help them along the way and comfort them for as long as they needed. They were given room to grieve, as well as the tools and support they needed to get through this tragic ordeal. My heart broke for these individuals in their time of struggle and I loved the way their communities rallied around them to ensure they knew they were not traversing this road alone.... It was beautiful!
When you get a diagnosis of a genetic condition or a Chronic illness. This usually takes place in a doctor's office. A frigid and uncaring environment. An in and out quick kind of place. If your experience is anything like mine. The specialist tells you the news. Rattles off a bunch of information about what you can and can't do because of said condition. Writes a prescription or two to help with symptoms, hands you a paper with online resources and suggests you study up on your newfound condition... all on your own. There is no hand to hold, no comfort, no guidance, and no mental health support. Just a paper with websites, a wave goodbye, and shown out the door.
Both of these situations are life-altering events.
Both of these situations SHOULD be handled in similar ways.
But they are not and this needs to change.
Because with chronic illness, it will never go away. You will never recover. This is just your life now....
You go home in a bit of shock and you go to the websites to learn that this illness steals your abilities a little at a time. Walking becomes difficult. You may get a rapid heart rate and about pass out if you stand for too long or stand up too quickly. It may not happen every time so it's a gamble. You experience excruciating pain daily. Your joints dislocate if you move wrong causing days of indescribable pain. Your muscles can't get stronger so you must protect them from damage, You have to start using mobility aids....
All of this information is overwhelming. Your family still sees the same you. Since nothing has physically changed on the outside, no one sees the turmoil you face every day. So there is no hand holding, there is no care and comfort. There is no room given to grieve. It is such a lonely process. You tend to feel misunderstood because no one else seems to get it. Then you wonder how you could expect them to because even you have a hard time understanding the whys of it all. You try to share information with those around you so they may get some understanding. Unfortunately, they may or may not believe you because this condition is pretty unbelievable. Sometimes they just don't want to hear about it. It doesn't affect them so listening is an inconvenience. Leading you to feel even more alone and while this is all happening you start healing from one loss when the next challenge begins. It's a never-ending cycle of grief and worry about what will happen next. You feel like a spectator watching the things you used to love to do fall away into the darkness that is now your life. You sometimes feel like you yourself are slipping away.......
You my friend are not alone. There are so many people silently struggling just like you. We are here and more importantly, we matter!
#1 tip I have is to set clear boundaries for those around you.
- No one gets to tell you how YOU feel!
- No one gets to tell you what you can and cannot physically handle.
-No one gets to call you lazy. Resting is very important for recovery.
- If you overdo it one day and need a day (or three) to recover, take the days you need to heal!
- Forgive yourself for what you couldn't do yesterday and do not worry about tomorrow because today is enough...
I have had to learn to say no. I was never good at it before but now I have no choice. There are things I cannot do. I have limitations. I have had to learn to shrug off people's unnecessary comments because they really don't understand. Let me be clear, it doesn't make what was said feel better, it still stings like a slap to the face, you just learn to roll with it. 
You eventually learn to roll with everything because you can either roll with it or close yourself off from the world and hide....
There are online groups for most conditions. I encourage you to find one that is a good fit for you and your lifestyle.
You are not alone, you are valid!
I see you...
I hear you...
and I am so glad you are here 💓
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