I’ve been diagnosed with a debilitating disease that is progressive and chronic and has no cure as of yet. I am in Week 2 of when the symptoms first appeared although at this point after going through my medical history, other symptoms have been manifesting all along; this was just a defining one.
I posted to my FB that anyone who wanted to know more could message me and quite a few of you did. The responses ranged from:
I will pray for you! You will be healed in Jesus name!
I am confused as to how to tell them to pray. Do we pray for a cure? Do we pray for the tests to come back negative despite all symptoms pointing to the positive? Do we pray for researchers to find a cure soon so I can enjoy its benefits? What do we pray for? What can I tell my prayer warriors to pray for? When what is now proving to be my final diagnosing symptom appeared, I asked for them to pray for the MRI to come back negative with no mass in my brain. I asked them to pray for the drug they gave me in the ER to be all I needed to make these symptoms go away. What do you pray for now that all signs point to a confirmation?
Are they sure?! It could be any plethora of things! Are you self-diagnosing?
It’s Ok; God is in control!
It’s not OK and is God really in control? Is He/She/It/Other in control and if so, why me? Please don’t say God has a plan for me.
I’m so sorry friend!
Damn! That’s such terrible luck given all you’ve been through the past 6 months and just when things were looking up, bam! I’m sorry friend!
Wow! Like I am speechless and I don’t know how to offer support because I am in shock, but wait, you must be in shock, right?! I’m sorry, just don’t know what to say!
Here are people living their lives despite the disease!
Lots of quick research of people surviving and thriving sent my way. Advice to research on my own and join a group or forums.
You got this! You are a strong woman. (if I had a dollar for every time someone said this to me!) You’ve done way harder things. It’s just one more obstacle to overcome.
And last but not least,
I’m sorry! That sucks! How are you feeling? Do you want to talk about it? What can I do? Who do you have to support you since you are in a new land? Here are some names of friends who have MS who would be willing to speak to you. Can I make some calls to MS clinics to see how long of a wait they have?
All reactions are valid but tonight I wanted to reflect on the fact that sometimes it’s the pausing a moment to make time for someone who is in shock and putting yourself and your particular schedule of business/busyness on hold for a moment to witness to someone else. To just let them moan and say, meen that sucks big time! I cried today because I was eager to get a second opinion and I did today and it didn’t change the outcome. I left the hospital in tears because a drug I have taken for 10 years literally left my memory for 2 hours and I couldn’t for the life of me name it when the nurse asked for my list of medications. Was I under stress or was this a symptom or both?
I struggle with buying into Western medicine too much and being over medicated. While on the other hand, I struggle with not taking them seriously and ending up paralyzed and unable to care for myself. Is there a happy medium when you are being told you are probably further along in the trajectory of the disease and you need to begin treatment sooner than later and the amount of lesions you have mean you will need more aggressive drugs which will probably have more side effects.
40 was celebratory for me. I loved turning 40 and I threw myself a wedding-like party. I did not foresee sitting here a year and a half later thinking I might soon be on a regimen that involves injecting myself daily. Soon beginning the dance of trial and error of med management. Soon beginning a new normal of preparing for flare ups and relapses and possibly them getting worse as the lesions get more and more intense. I didn’t think that anything could be a worse life sentence than Bipolar Disorder.
Tonight a new friend I literally just made on Monday, cancelled her evening appointment and came to sit with me in the cafe of the pharmacy where I was going to pick up prescriptions. On Saturday, another new friend drove the 30 miles to come have coffee with me and wander the farmers market with me. My supervisor took me to my doctor’s appointment and advocated to move me to a larger hospital. A tenant in my building drove me to the appointment because I was still experiencing double vision. These women, new friends I just made, let me whine and kick and scream and say why me?! And one watched me shed tears as I faced the uncertainty that my future now holds, encumbered by yet another chronic illness.
I’m tired of being strong and I’m tired of feeling like I have to fulfill the strong woman role. None of us know IT’S GOING TO BE OK! I know that folks are deeply conditioned to offer platitudes when faced with harsh truths, but I’d like to pause for a second and say shit! I feel like I just got handed a death sentence. I’m sure prayer is helping in me not taking a leap at my lowest points, and I’m sure staying hopeful will help as I begin this journey, but for now, SHIT! WHY ME?! And I need you to say it with me!