There’s only so many times you can tell people, “I’m fine”, “I’m OK”, or “I’m good” before you start believing your own untruths. Those are answers based on how I’m doing physically, but the emotional side of things are rarely addressed. Most of the time the “I’m fines” start as ways to get out conversations I’d rather not have – because let’s face it, not everybody wants to hear how you woke up in a panic in the middle of the night with a dry throat and thought your kidney function was worsening with each breath. So yeah…I’m good, lol.
But slowly, these emotional lies have become my twisted mantra to rush past the pain – to jump into something to prove to myself that I am the same woman I’ve always been. When my body tells me it’s time to rest, I shrug it off with an internal “I’m fine”, “Just one more thing,” “Gotta get this done,” etcetera, etcetera. The emotional and mental weight of it all is so heavy, so draining that I think being a mute wouldn’t be so bad. As an answer to my previous post asking “Who are You?” , right now I’m my worst critic. That’s hard to swallow. I feel exposed and vulnerable, something a control freak like me absolutely hates.
Four years of “pushing through” and “getting through” and fighting and climbing with the spirit of some old Negro spiritual…except I really wasn’t. I was skipping over the pain and staying busy – building this website (oh, the irony), going to support groups and community health fairs to educate, hugging, consoling, listening – all great things to do, but not done in complete truth or devotion. Sometimes we do things because we need to do, or we oughta do it, not with the desire to do it. And when I do take the time out to rest or be quiet those moments of silence don’t last long because I equate it with being unproductive. In my head, there’s always a dish to clean, laundry to do, dinner to cook, something to plan. And a lot of times I was using God as a scapegoat, sending praises up knowing there were still unresolved issues that I hadn’t prayed about to Him.
But today I make this confession: I am not fine. I am not OK. I am not good. I have Lupus. I need a kidney transplant. I most likely will not be able to give birth to a child.
These are the things and thoughts that keep me up night and and steal away my peaceful moments. Three weekends ago I got the news that a distant cousin who suffers from Lupus – who was estranged from the family and that I never got to meet – died from Lupus complications. From what I’ve been told, an aunt she was close with repeatedly requested and offered for her to go to the hospital in her last days – yet she refused. She refused to be cared for.
The pain I felt was delayed. In fact that Saturday I had another “task on the books” – to run/walk a 5K.
But as the weekend went on I thought about her, and I kept thinking about her into the work week, and the next weekend. Did she feel alone? Did she have support of other Lupus patients who knew exactly what she’s going through? What happened to her spirit to fight?
It was crazy scary because I know how hard this disease can be and how it can take a toll not only physically, but emotionally, mentally and spiritually. The journalist in me wouldn’t let it end there. I started examining why this was hitting me so hard. Yes, she was family, but I didn’t know her. Didn’t even know what she looked like.
And then it blindsided me. Even though I’m not her, I could see myself in her. I think any Lupus patient could.
That rock-bottom, despondent part of us we all have inside if we let ourselves go there. I try to avoid that part at every cost. The key word is avoid. I don’t like dealing with it. There was no struggle because I didn’t allow it. I simply jump from task to task and don’t take the time to sit still and… I don’t allow myself to be cared for, according to my therapist. Eerie. Oh yeah, I’m seeing a therapist now. Not something I’m totally comfortable putting out there because of the stigma in the black community, but I’m hoping putting my “business in the street” is helping you.
I can’t be a hypocrite to my family, friends or followers anymore and my twisted mantra is going to have to take a back seat to getting at the heart of what’s really going on. I can’t dole out advice that I don’t take, even though I don’t claim to be an expert on Lupus or anything else. I have to confront the words “adjustment” and “accepting” when it comes to living a full life with Lupus – and that will be such a struggle for the girl who wants to be any and everything. What goals will I have to “adjust”? What limits will I have to “accept’? And maybe my perspective is all wrong. Exploring my emotions – even though it doesn’t seem like it – is scary, unchartered territory for me. But it’s necessary and it’s time.
This line from Paul Laurence Dunbar’s poem “We Wear the Mask” is poignant:
Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while We wear the mask.
Step 1: Slowly, but surely, I’m putting down my mask. And I hope this inspires you to put yours down too.
How are you working through the emotional issues that Lupus brings?
One of the most difficult parts of severe rheumatologic illness is having to truly slow down, being forced to slow down, working against everything you’ve been taught and have taught yourself to do. Going from Superwoman to enforced rest to protect your body.
I think you are wise to see a therapist; I did the same at the crossroad where I became very disabled. Doing so made the adjustment to a disability or chronic illness identity much easier–that identity didn’t replace the other parts of me, but it helped me find others and get support.
Sometimes I think others don’t know how hard we really try, how much a mask many women wear, and that’s what makes it so hurtfully poignant if others are hard on us, because they can’t see the world of trying and pain underneath. Or they miss the precipice we are aware of or that we’ve lost friends to.
First, thanks so much for taking the time to comment! You have NO idea what it means… or maybe you do since you’re a fellow blogger. I’ll have to check out your place soon. ;-). I’m so glad you can relate to the post. I am so independent it’s scary and now that I HAVE to deal with Lupus limitations it’s causing me to really examine how I live my life. I wonder how many women with Lupus, particularly black women since I can identify with this group, take the time to assess how they are emotionally, or do they throw those feelings aside and “keep it moving”. Great discussions to be had on this. Thanks again for taking the time out to share your view.
Also, on my own mask–in my early blogging days, I thought I talked about my illness and vulnerabilities. I really didn’t, and I see that now. I remember avoiding discussions of exact diagnoses and what was going on. I have overlap syndrome now because of multiple autoimmune illnesses; not lupus, but many of the symptoms of it that don’t fit my other diagnoses.
Hello, this is osaxy from Twitter. Beautiful blog. Your words are so poignant to all of us suffering with Lupus and any form of autoimmune disease. We all go through that task by task part of the disease. I did it for 23 years by working through the pain full time, going to support group meetings etc., just like you. I had to raise my daughter, I was lucky enough to have, so I pressed on with all the “I’m fines” till 2 years ago when I was fired for being too sick. Then the emotional side got dealt with whether I wanted to or not. That came in what I can say was a nervous breakdown due to losing my “identity”. I hear your emotional side loud and clear and I keep trying to address it on Twitter. Maybe someday I will actually blog. I have so much to say. Thank you for sharing your beautiful words! I applaud you!
🙂
Love to you!
SHERI
Thanks so much for reading. Helps me know I’m not alone. Your quotes on Twitter are so authentic and heartfelt. They’ve touched me and many others. Keep going!
I could have written this myself. I tell you what…in order to deal in truth – we have to stop being so hard on ourselves. That is what put me over the edge – the guilt of not being (fill in the blank). I pushed myself so hard that I cracked. But it was the best thing for me…couldn’t pretend i was OK any longer and had to come to grips with the fact that not being OK at some point has to be OK.
Love your words. It will all fall together. It is the truth about ourselves, no matter how tricky, that makes us – creates us to be free.
Much love to you!
I have two similar posts – check them out if you like.
http://www.killingsuperwoman.com/2013/07/being-myself-has-made-me-different.html
http://www.killingsuperwoman.com/2013/06/there-is-no-before.html
I’m slowly learning the truth sis. And I’ll definitely check out your posts. 🙂
Gabrielle, thank you so much for sharing this. I was only diagnosed in May and still can’t get my head around this whole thing. I don’t want to be this person I have become, I had to resign from my work on Monday and also feel a loss of identity that went with it. I am fortunate to have had my 3 kids before I got my diagnosis, I can’t imagine the thought of possibly not being able to have children so my heart breaks for you. Your words really touched me, as I feel the same struggle of ‘hiding my pain’. I feel that if I was honest about how I am feeling, people would get sick of me, because there is no answer, no cure. Just pain and loss. I have adopted the same approach as you did, saying I am fine and hoping I don’t break down in tears before they believe me. The last thing I want is pity, just understanding.
It has helped me to read your post to know I am not alone with my feelings. I guess this is normal for us now. I still have a lot to learn, especially about not being so hard on myself.
Thank you again for your beautiful heart felt words, sending you love c:x
Alison,
Thanks so much for reading! I saw your message early this morning, but didn’t want to reply in a rush. I’m sorry about your diagnosis and having to resign from work. I can so relate to you feeling you lost your identity. When I was diagnosed in July 2009 I didn’t know who I’d be. It seems everything I was was based on performance.
Dealing with the diagnosis is a fine walk of not giving up, knowing your worth (that this disease won’t break you and you can still be worthy to people and have a full life) and being wise with your body (because unfortunately there are limitations). I fall off sometimes, but get back on in time. Keep being honest about how your feeling with those you trust with your emotions and feelings. I pray you have a circle that will support you no matter what. Also, it’s good to have one or two lupus friends that you can completely be open with. I have a page called Lupus Sistas on Facebook you can join. Also, get hooked up with your local Lupus group and meet some new people that are going through what you’re going through if you can.
Yes, yes, yes – I just want people to LISTEN. As human we’re so solution oriented, especially when people we love see us hurting. They just want to help. If you can remember that they’re coming from a good place (those in your inner circle that love you) you’ll begin to open up to them and tell them you just need a listening ear.
I am so glad that my post helped you. Honestly I haven’t been active with blog in a while, but you blessed me today and helped me to keep going with it.
Sending you love to hun. Always around if you need to reach out and don’t be a stranger!!
xoxo