It has been a few months since I last shared a post on our blog. This blog has been a big part of my journey since losing my dad to suicide in 2011. Luckily, I have an amazing co-creator and have been blessed to have Kimberly volunteer her own time to help keep this site going. In addition, it is our readers who have helped keep us going. You share your stories with us and allow us to share them with our little community. You allow yourself to be vulnerable in hopes of offering support to someone who is experiencing unbearable pain. From the bottom of my heart, I thank you all. It is a true reminder of the good that exists in a world that often feels intolerable. Because you all share so much with us, I wanted to share what has kept me away for the past few months.
For quite some time now, I have been experiencing several health-related issues. Nothing serious, but one by one the list of unexplained symptoms continued to pile up. I began seeing doctors a little over a year ago in a quest to figure out what in the world was going on. I saw every specialist under the sun. One by one, they would uncover a problem, but couldn’t explain what it was connected to. They would refer me out, to yet another specialist. It was exhausting and completely defeating. At one of my lowest points, I remember laying in a towel on the floor of my closet. I was out of energy; the fight had been sucked out of me. My husband came in and was notably concerned as I often don’t display my defeat. I looked at him and said, “I get it now. If this is how my Dad felt, I would have done the same thing, because I can’t imagine living the rest of my life like this.”
It is difficult knowing that there is something wrong but feeling like nobody hears what you are saying. Being 36 and in good physical shape, I wouldn’t get taken seriously. “What could possibly be wrong with you?” I had a cardiologist ask me that. Not easy to advocate for yourself after something like that. Not to mention the debate going on in my head as I questioned my own sanity. I wondered if that was how my Dad felt, how others feel when they know something is wrong but can’t find anyone to listen. Was he validated, or did he hear the same things I heard? “It could be worse.” “It is in your head.” “This too shall pass.” Comments like that are completely defeating. They lead to moments like the one I had, hopelessly laying on the floor of my closet. To be honest, I am not sure how I picked myself off that closet floor. I guess it is just something I have always done, so not getting up just wasn’t an option. So, the fight continued….
I can say that I finally did find someone who listened, someone who was able to put all the pieces together and explain what was happening. I am now part of the autoimmune community, which has sadly become so common. I was diagnosed with Mixed Connective Tissue Disease in addition to Raynaud’s syndrome. Thanks to my continued fight I might not develop Lupus which is the path that I was on, had I given up the fight for answers. It has become my new journey which like grief, isn’t always easy; however, it has provided me with a few new insights:
- There is no quick fix. We live in a world that wants instant answers, instant results. We want to take a magic pill and feel better. It really doesn’t work like that. Like, at all. It is about changing your entire lifestyle. Maybe medication is part of the regime, but it is just that; only part of. I have had to change how I work out, change what I eat, change how I prioritize sleep, and most importantly, change my expectations of self.
- You must advocate for yourself. Nobody else knows or feels what you are feeling. If you don’t feel understood by your doctor or therapist, leave. Find someone who will listen. You are the expert when it comes to you.
- Use the many resources that exist, yet we often forget about. I spent hours doing my own research. I went in prepared to ask questions and requested specific tests. If I didn’t, I am not sure if anyone would have ever put all the pieces together. Well they would have, but it would have been years from now when I was truly hurting.
- Don’t isolate. Talk to your family and friends. Tell them what you need from them. We often tell people what we need but stop talking when they don’t respond how we want them to. Tell them what you need. They are usually trying to help, but simply don’t know how. Teach them.
- Lastly, and more importantly, maybe it isn’t always mental health related. Maybe the physical pain, has led to the mental pain. I had a number of doctors tell me I was depressed and prescribe medication. I am a licensed therapist for goodness sakes and still, they wouldn’t listen to me. I was depressed because nobody would listen to me. The depression I experienced was a result of the physical pain. It was a result of not being heard.
Thank you all for your continued support. We couldn’t do it without you all!
-Jessica
Thank you for sharing. This site has become such a place of love and support for me.
I’m sorry to hear you haven’t felt well- can be scary and overwhelming to have chronic issues unresolved. Best of luck in your journey to getting the best possible care. I too think sometimes of my dad’s suicide when I read or hear comments questioning how a parent could choose to leave his or her children- it speaks to the level of pain my dad was in. God bless our Dad’s 💙
Hi Jessica,
Thanks for sharing your struggles with us. I’m sorry you had such a rough time finding answers. I’ve been down that road as well. I was diagnosed with Lupus, Raynaud’s syndrome, and Fibromyalgia at 20 years old. More recently, I just had a 2 year battle with doctors before receiving the diagnosis of juvenile idiopathic arthritis for my 7 year old son. But I can tell you that I have felt exactly as you described. I’m also only 36 years old, and it can be really hard sometimes to think about living with the things I struggle with for any amount of time longer. I just have to remind myself that although I may live with Lupus for the rest of my life, and with depression and anxiety, the moments of that defeating intensity won’t last forever. There will be times when I will feel great again, and laugh and be so grateful to be alive; so I just need to hold on through that moment and wait for it to pass.
Try to remember to take care of yourself; easier said than done I know. Over the years my husband and I have developed a system for how he can gauge when I need his support the most. I’m sure that as you move through the initial stages of learning what you’re living with, you’ll find ways to modify your everyday activities to reduce the pain or other symptoms. For me Icy Hot is one of my best friends!!! One year my husband left roses, chocolate, a bottle of wine and Icy Hot on the counter for me to cheer me up when I was having a bad day!!
I’m really grateful that you brought this up though. So often people miss the physical components when there are psychiatric symptoms present. My story is a little different from others for a couple of reasons 1) my husband went from just being a normal guy, to cycling out of control almost over night… due to head injuries. I had to fight and fight with doctors from some of the country’s best hospitals for them to see it. I advocated like crazy, documented everything, and got him the best of the best of doctors. It took 2 hospital stays before they really started agreeing with me, but by time they listened he was so far gone. 2) on 9/3/16, I found my husband hanging in our basement. He had no pulse when I got him down, and without going too far in detail, was by all means expected to not make it through. But he did. He woke up from the coma and he has made incredible progress, despite now having an anoxic brain injury on top of his already present head injuries.
We had a long painful journey leading up to that night, and although things have gotten better over the last 3 years, our fight in this will never be over. I have pretty bad PTSD now, it can be completely debilitating, and what makes things harder for me is that he remembers absolutely nothing.
Anyway, I didn’t mean to go on this much. I always feel guilty talking about my experience to people who’s loved one didn’t survive. But I did want to let you know that I appreciate you bringing this topic to light, and to let you know that within the autoimmune community you can find a lot of great support.
I wish you the best of luck <3
Jodi
Thank you, Jessica, for sharing your experience. There is much “food for thought” in your writing.
Jessica, thank you for sharing this story. You were courageous to get to the bottom of it. Long may you thrive!