06/21/2024
Living with Chronic Illness
Some of you know, and many probably don’t, that I’ve struggled with a “bad stomach” all my life. My family calls it the “Baird stomach.” At times, it’s manageable, and at times, it’s completely debilitating. If I had to explain it, it’s like having a stomach virus anywhere from 12 to 24 hours a day, every day, when it flares up. It’s a vicious cycle of my brain wanting to do one thing and my body saying no. It’s the frustration, shame, and guilt that comes with having to cancel plans or not make them at all, letting down others, and not being able to be reliable to myself or others.
It's the constant, “Well, you seem fine,” and I may be at that time, but the weeks or months leading up to it are excruciating. It's one the one good day out of 7, or 30.
The past couple of years, I’ve tried going more holistic, knowing the capabilities of our bodies to heal themselves. Most of my symptoms went into remission…until they all came back strong and brought along some new friends 6 months ago.
My belief and knowing caused me to have a close-minded view of healing. In most other areas, I’ve become so open, so willing to see different perspectives, that I couldn’t even see that it was causing me to suffer needlessly. I have been so jaded by western medicine that I gave up on it helping. And in doing so, I became a victim of my own circumstances.
I am opening up and blending the two. I’m not yet at a place where I can allow my body to heal on its own. My belief in western medicine is that it has its time and place. I feel western medicine mostly focuses on the “quick fix” without addressing the root cause. I believe a medication can be helpful, but at the same time, figure out what is going on in my body that it needs it in the first place! A lot of the time, western medicine is focused on a band-aid fix, and I demand the solution!
I still have so many daily life factors that impact the ability to heal myself. Admitting to myself that I’m not quite there yet has been a difficult road. My nervous system and my body are fighting to maintain homeostasis.
***Update – I wrote this before I went to a new doctor about another issue I was having, and these new issues most definitely impact the stomach issues. It impacts every organ in my body, and some of the damage, they say, is non-reversible.
Why oh why did it take learning this before I fully gave myself grace for how awful I’ve been feeling??? But I digress…
This is where I believe the energy work will complement western medicine. I feel in my soul that if I am doing things to nurture the other issues, my body will respond to healing modalities I love so much.
This is all to ask my network for a call to action!
If you are or love someone with a hidden chronic illness, please educate yourself on that disease. Typically, the only support we receive is from others who are also suffering. We want to be there for others dealing with it, but because of the unpredictability of the disease, we don’t know when it will strike, and we can’t be counted on for that support that is so needed. This causes even more guilt, and the cycle continues.
When someone has a life-threatening disease, there is an outpouring of support, meals, etc. However, if it’s not life-threatening, we’re told it’s all in our heads, to suck it up, be appreciative it’s nothing worse… That does not help. It just causes us to ignore what we’re feeling and start suffering in silence. When it gets bad enough, we give up. Numbing out to deal with it all, not taking care of ourselves, and making the illness worse. It’s a cycle I think we all can relate to in one way or another.
And I get it, being a caretaker for someone with this type of illness is exhausting. You’re picking up the slack, you’re giving up your time and energy. You probably never feel like it’s about you because the focus is always on their health.
However, if it is someone that you truly care for, I recommend trying some of these:
- How are you today?
- Is there anything I can do to make things easier?
- It must be so difficult to have a disease where you feel so awful on the inside, but it doesn’t show on the outside.
- I am so sorry you’re going through this.
- I wish I could take your pain away.
- I may not completely understand your disease or what you’re going through, but I’d like to.
- I am so sorry I judged you before understanding your disease.
And if you want to truly know what it is like for them, ask the people that live with them. They probably recognize even more what it’s like because they see things and the impact from a perspective that we often do not see.
I’ve asked my husband to start coming with me to appointments because:
1. I am a woman, and talking to a man often gets dismissed as “it’s all in your head” or just our “hormones.”
2. He understands and sees the daily impact: the pain, the tears, the frustration, anger, depression, etc. The toll it takes.
3. He knows I downplay it every time. (I’ve been working on this and meeting myself where I am at so I can do the same with others.)
4. He reminds me who I the F&%k I am and to stand up for myself when I feel like giving up.
5. He doesn’t use it to control or manipulate me because if you know, you know…that isn’t masculine, it’s abusive.
And yes, could I do all that for myself? Sure. But there are days my humanness shows, and I don’t have it in me to fight on my own. Having someone with you is so important. Not only for support, but to help listen and ask questions on things you may have missed or had not thought about. This role is not an easy one to take on, but it makes such a difference. It makes us feel like we’re not fighting on our own.
I DO NOT believe it’s something I just “have to deal with,” and I KNOW there is the right doctor out there that will get to the root. I think we’re starting to get closer, but there is a ways to go. I told myself I would never give up on myself again, and I’m not going to start now. Let’s go!
