Recently I have had a bout of challenging medical situations. What makes it worse is this was not some simple flu, or even more complicated but curable fluke of a complication in life. I was admitted to the hospital because while spending a lot of time outside my body was just destroying my electrolytes. No matter how many liquids, water, or electrolytes I fed my body I could not keep them. In fact when I left the hospital the nurses even admitted that my body was doing weird things with potassium, basically unable to maintain it.
Now this all sounds bad enough, however what made it worse is I have a chronic illness, and an invisible disability (read about it here). With no large intestines it is challenging for my body to hold on to water and create/maintain electrolytes. Therefore I am highly at risk for dehydration. Even though over the past 20 or so years, I have managed my health without ending up back in the hospital, and for 14 years I managed everything via diet and yoga; my body gave out.
Here is my current challenge; I do not know how to navigate this world with this current limitation. In fact I have a habit for pushing myself too far too quick; and also have a number of complexes regarding being a chronically sick person. I have never allowed any of the challenges in my health to hold me back for any reason, and now here I am unable to be outside during one of the most beautiful summers, in one of my favorite places.
I not only spend the majority of my time outside; but currently I both live and work outside. When I first got out of the hospital it was a Friday. My bosses and I decided it was not a good idea to jump back into a 10 hour day in the sun for the weekend, so I took the weekend off. I also took Tuesday and Wednesday – we do not work Mondays. Thursday I showed up to work at my week work job, where I knew that I should not stand, knew I should not be in the little hut where we all congregate, knew I needed to be in particular places and doing very mild jobs. However did I voice any of this to the manager? Nope. At best I asked to do a smaller job that I knew I could do, and he wanted to be efficient. Furthermore I had spent the five days I had off inside climate controlled environments.
Needless to say my lack of expressing what I needed, and my lack of readiness to work; I almost went down again. As luck would have it I managed to recognize that in the hour and a half I was at work I had drank almost a half of gallon of water, several other liquids, and not once did I feel the need to use the bathroom. The walk home proved difficult, and, once I recovered, I cried. I felt weak, vulnerable, useless, and most of all I was disgusted with myself. Nonetheless it boiled down to one simple fact; I could not work that week, or that weekend. Possibly I could not work outside again until next year when my body could readjust.
Anyone with a chronic illness, particularly an invisible one, will tell you the mental and emotional aspects can sometimes be far worse than the actual physical aliment. For me, I feel shameful. I have a hard time reconciling what I can do verses what I cannot. I take it very hard when I cannot do something, and worse when I seem so healthy and normal; but on the inside I am on the verge of a serious break down. Not to mention that after a year of searching for my identity losing the “always healthy with an invisible illness” badge was heartbreaking.
Now all this mental and emotional baggage is a bit more complicated and varied then I am making it out to be; nonetheless these feelings cause me to shut out the world, isolate, and turn only to people I think may understand. Once someone ‘proves’ to me they do not understand what it is to feel so vulnerable, I tend to just back away, quickly and hard. The most challenging and common is just to stop speaking to my employers. Why? Because I am ashamed that I cannot work. I ‘know’ that it is not my fault. I ‘know’ that if I could I would be working harder than ever. However physically I just cannot and mentally I do not want to accept it. My mind begins to rest on “how am I supposed to explain to someone that I cannot do something when on the outside I seem so normal? When for as long as they have known me I rarely get a cold? How do I get them to understand?” I often times will overly explain, talk too much, hide behind humor, and eventually just stop talking all together.
Finally, a week and some change later, I began taking steps to “put the pieces back together”. It felt as if my life imploded and I just ran away. I was mildly unsure of what was happening with work and with many of my friends. I could not bring myself to admit to everyone how useless I was, and yet had the work been inside how I could still function properly. I could not bring myself to explain the mystery of it all, nor did I want to hear the well meaning but uneducated guesses as to what was going on.
It was during this week of calling my different bosses, and putting pieces back together, that I realized something. One of my bosses mentioned to me that, “they were there for me; I just had to tell them what I needed.” It was a funny cord that was struck inside of me. I had spent so much time relaying on myself, making everything work by myself as best as I could; I did not know how to tell them what I needed, or that I needed anything at all. I am someone so good at setting boundaries, but when it comes to needs I rather go without and suffer than explain to someone that I actually cannot do something.
It has all been a bit of a slap in the face, and honestly a deep lesson. The theme of what someone needs verses their boundaries or wants has come up as a theme not just for me; but I have also recognized it in some of my closest friends around me. It can be the case that we can set the hard boundaries, the ‘please do not touch me’ or the ‘I do/do not want to do that’; but those responses are out of a desire, or an anti-desire, a want. Needs are different. Needs are things that do not always line up with wants. We may need a night in but do not want to miss the party. Sometimes we cannot have both; but we must honor and value our needs first.
To quote a very famous song, “You can’t always get what you want; but if you try sometimes, you might find, you get what you need.”
Practice in Peace and Love ❤