To those that feel they have chronic illness support down and don’t need to be told again how much their loved one is suffering... I applaud and respect you.
To those that judge from a place of love and fear because they want their loved one to have the best future possible... I see and thank you.
To those that love unconditionally but can’t grasp why their loved one seems consumed at times trying to find the person they used to be, using every book and doctor to find their way... I hear you and offer you my own personal open letter.
I think being the support system in someone else’s chronic disease may take an even larger emotional toll than on the “sick” individual. The difference is, as unfair as it may be, the support system can’t take it out on the patient. They already feel the weight of their own life as well as the weight they put on everyone in their lives. If you think they’re wrong, if you need to vent, that’s normal. But you need to find your own support system, because those of us with chronic disease may not always be in a place where we can hear your concern without feeling even more negatively about ourselves.
Come back to us after you’ve vented and expressed frustration with your ideas and plans. We already feel like burdens and failures. We often can’t support you in your frustrations towards us without going into the deep end.
So to those who think my life is too focused on CRPS:
My first response is, of course it is. It is a widely unknown and misunderstood disease that has taken over 18% of my life. For four years I have had a figurative parasite destroy my body and rewire my brain.
In that time I have also matriculated two bachelors degrees, worked internationally with war torn refugees, done on the ground case studies, learned a new language, and maintained my pharmacy job and license. The biggest thing I’ve done is get my dream job with the Peace Corps... only to have my medical clearance denied. Because I’ve been sick so recently. Because I am in remission and that could change at any time for any reason- no doctor has an answer for that. I try not to let fear consume me, but put yourself in my shoes and ask if you wouldn’t always have some fear in the back of your mind when trying to plan a future... knowing the excruciating past could return with no warning.
This is one example of how this disease and its toll on my body and mind will be around for a while. How it will impact my career, my daily life, and my relationships.
Though this is truly not an even comparison, if I was pregnant and posted about progress and feelings because something was growing inside me each day, would I be judged as harshly? If I thought about babies all day and prepared for the future, would I be considered obsessed?
Why then, is understanding my disease and finding doctors and imagining hope such a negative thing? If I don’t do it no one else will. No doctor is calling me up saying “hey, I heard about you and I have the fix”. Trust me, I tried. I have found my own treatments, clinical trials, and experimental surgeries. I have taken my life from dark and not worth living to something that could really be amazing again. I did that. I found it. Because I was ruthless in knowing every piece of my disease.
And now I post about it to help others. To offer support and guidance and that is ALL that I want in return from family, friends, and kind strangers suffering their own problems. I don’t expect you to have the answers when you haven’t even heard of this disease before. I also don’t appreciate you to telling me to chill out and let the doctors do the work... because, again, you likely have no knowledge of the number of doctors and failures I have endured over the years.
I know more about crps than 99% of the people in my life. I DO NOT say that to shut conversations because I am the only one allowed an opinion. I say it to help you realize that you listening and helping me problem solve when I ask are truly the only things you can do unless you are a medical expert. So please, to me or anyone else you know going through anything (because we all are), assume we are trying our best. Assume we know our limitations better than you. Assume we know all of the negatives you interpret, because we FEEL them day in and day out and we are simply doing our best until we learn better.
The best support you can offer is a listening ear and words of encouragement, because advice isn’t being sought unless that is made explicitly clear.
This is not a judgement. This is not an attack. If you have stuck by your loved one, or me, this long, there are no words for how much I appreciate you. I tear up just thinking about the friends and family I know support me and love me even when I feel my worst.
This is a plea for you to continue loving me when it’s hard, and to direct your frustrations to a healthier audience to hear them. My promise is I will do the same and do everything I can not to take out my frustrations about my unexpected life at you.
Thank you.
You have no idea how much I love you.
Danielle
To those that judge from a place of love and fear because they want their loved one to have the best future possible... I see and thank you.
To those that love unconditionally but can’t grasp why their loved one seems consumed at times trying to find the person they used to be, using every book and doctor to find their way... I hear you and offer you my own personal open letter.
I think being the support system in someone else’s chronic disease may take an even larger emotional toll than on the “sick” individual. The difference is, as unfair as it may be, the support system can’t take it out on the patient. They already feel the weight of their own life as well as the weight they put on everyone in their lives. If you think they’re wrong, if you need to vent, that’s normal. But you need to find your own support system, because those of us with chronic disease may not always be in a place where we can hear your concern without feeling even more negatively about ourselves.
Come back to us after you’ve vented and expressed frustration with your ideas and plans. We already feel like burdens and failures. We often can’t support you in your frustrations towards us without going into the deep end.
So to those who think my life is too focused on CRPS:
My first response is, of course it is. It is a widely unknown and misunderstood disease that has taken over 18% of my life. For four years I have had a figurative parasite destroy my body and rewire my brain.
In that time I have also matriculated two bachelors degrees, worked internationally with war torn refugees, done on the ground case studies, learned a new language, and maintained my pharmacy job and license. The biggest thing I’ve done is get my dream job with the Peace Corps... only to have my medical clearance denied. Because I’ve been sick so recently. Because I am in remission and that could change at any time for any reason- no doctor has an answer for that. I try not to let fear consume me, but put yourself in my shoes and ask if you wouldn’t always have some fear in the back of your mind when trying to plan a future... knowing the excruciating past could return with no warning.
This is one example of how this disease and its toll on my body and mind will be around for a while. How it will impact my career, my daily life, and my relationships.
Though this is truly not an even comparison, if I was pregnant and posted about progress and feelings because something was growing inside me each day, would I be judged as harshly? If I thought about babies all day and prepared for the future, would I be considered obsessed?
Why then, is understanding my disease and finding doctors and imagining hope such a negative thing? If I don’t do it no one else will. No doctor is calling me up saying “hey, I heard about you and I have the fix”. Trust me, I tried. I have found my own treatments, clinical trials, and experimental surgeries. I have taken my life from dark and not worth living to something that could really be amazing again. I did that. I found it. Because I was ruthless in knowing every piece of my disease.
And now I post about it to help others. To offer support and guidance and that is ALL that I want in return from family, friends, and kind strangers suffering their own problems. I don’t expect you to have the answers when you haven’t even heard of this disease before. I also don’t appreciate you to telling me to chill out and let the doctors do the work... because, again, you likely have no knowledge of the number of doctors and failures I have endured over the years.
I know more about crps than 99% of the people in my life. I DO NOT say that to shut conversations because I am the only one allowed an opinion. I say it to help you realize that you listening and helping me problem solve when I ask are truly the only things you can do unless you are a medical expert. So please, to me or anyone else you know going through anything (because we all are), assume we are trying our best. Assume we know our limitations better than you. Assume we know all of the negatives you interpret, because we FEEL them day in and day out and we are simply doing our best until we learn better.
The best support you can offer is a listening ear and words of encouragement, because advice isn’t being sought unless that is made explicitly clear.
This is not a judgement. This is not an attack. If you have stuck by your loved one, or me, this long, there are no words for how much I appreciate you. I tear up just thinking about the friends and family I know support me and love me even when I feel my worst.
This is a plea for you to continue loving me when it’s hard, and to direct your frustrations to a healthier audience to hear them. My promise is I will do the same and do everything I can not to take out my frustrations about my unexpected life at you.
Thank you.
You have no idea how much I love you.
Danielle