“I see the pattern over and over. Sickness puts stress on relationships, regardless of who it is: children, a spouse, a friend or sibling. Sickness changes things and most often, people.”
I believe social life plays a huge role in the well-being of those affected by chronic illnesses, which is why I especially wanted to cover this in the blog’s pages.
I know the ‘outs’ of sickness. It’s difficult to watch that sick person change, to watch them sink into nothing more than confusion and fear. They run to one extreme, then back to the other. Or they sit without motivation. It’s hard to watch them battle through the unknown. You want to help. So you try.
I know the ‘ins’ of sickness as well. Its difficult to feel alone and misunderstood every time that person walks into the room. Life holds grief beyond what you ever imagined possible and you think they couldn’t possibly image it. And you wish they’d just be quiet and go away.
People added to my stress as a sick young woman without a diagnoses. Particular individuals added to my burden through silence, avoidance, or what came across as flippant advice, seeing that they knew nothing of my situation.
Isolated, alone and weary. I’m not blaming anyone; before I contracted CLD I was one of them:
“If people would only toughen up we wouldn’t have these problems!”
Never having experienced much sickness or limitation, it was easy to give flippant advice to those who were struggling, or just carry an attitude of indifference. “I don’t understand your world and you don’t understand mine,” and so it was easier to avoid these people. Health issues are difficult for everyone involved.
When battling my sickness, people either represented struggle or hope. Often struggle.
They didn’t understand.
I was extremely vulnerable, honestly using every resource I had to bear up under the weight of everything the best I could. I’m a fighter, not a feel-sorry-for-myself type. I’d sooner buck up and fight back than go have a pity-party in my room.
But when hormones are unbalanced, when I’m on edge and irritated 24/7 due to toxins, my body so weary it won’t wake up in mornings; when skin has turned pasty and yellow from struggling organs, when I can’t sleep because I feel “twitching” under my skin into the wee hours of the morning, when I collapse exhausted, when I have to struggle with normal, simple bodily functions, when I felt so scared and desperately alone, when being around others’ triggered a frustrated response, children’s loudness and busyness wore me out, when noise set me on edge, when doctors can’t find anything wrong with me, when my entire being (brain, hormones, nerves, muscles, everything) begins to shut down, it can be very difficult to be around people!
I was feeling too vulnerable to be around strangers because I could no longer think of questions to ask and thinking required energy. I was fearful of people I knew, that their comments would fill the sinking ship and it’d truly sink. I wasn’t normal and that bothered some people. I wasn’t willing to put myself in situations where I didn’t have assurance of a ‘get away’ place to rest and have quiet. I didn’t want to email or facebook friends. I was too weary to sit at computer and think.
Issues like these caused me to isolate myself even further. I continually withdrew for self protection. It was defeating to know others thought less of me. This also challenged who I was to the core of my being. I was always was a people-pleaser in my own hidden way and now it seemed no one was happy with me! And as a woman (relationship means so much to us!) and one who did love people, it was easy for me to feel guilty or as if I were a traitor. All these people who offered me friendship were fading into the background. Realizing they had the right to consider me an uncaring friend made me ashamed, so ashamed of myself.
I did care yet was so tired and worn down I didn’t care about anything except finding relief! People had every right to consider me a rotten and selfish friend. In my head I didn’t doubt that they saw me in that light!
And had we talked, they probably would have been justified in their thinking. I wouldn’t have retained anything they shared with me. The next phone conversation could have been a repeat of the previous and I’d not have known the difference.
Words and attitudes were also flowing from me like I’d never before experienced. This also added to the pressure when I was around others. I constantly had to keep my mouth in check and my irritation under control. It wasn’t an easy task! Small wonder I found people exhausting!
I’ll be the first to admit its easy to become self-focused when sick. It is. But really, think about it from my perspective: in that time, my life did revolved around self. I was trying to learn and cope with this “new” stranger that lived inside of me. Who was this person anyway?
My first year of treatments began after attending the first wellness center. I stayed home and did 2-4 hrs of treatments every day. Some of them were so grueling, so hard that I burst into tears in the middle of them, finish off and crawl to bed, still crying. I was also working 3 days a week and upon coming home would do treatments until bedtime. The time I did have off I was sleeping, trying to spend time with my boyfriend and get to know him, trying to get ready for work when it came around again.
Who I was as a person changed and healing was about getting to know this new person; her limitations, causes of various reactions, learning to read the body before it broke down, adjusting to hormonal change, noting how various foods effect my overall being, constantly being aware of moods and triggers, trying to find new activities and hobbies that I enjoyed (cause I was feeling very empty with a weak body), preparing clean food for myself every meal…try to not be self-focused, just for a moment!
Its natural for a sick person to become self centered. What else have they been investing into? What else does life revolve around? Just like someone who is emotionally hurting, has lost someone they love, has separated from a spouse, has been abused…you can’t just snap out of it. Its a journey to rise and walk out! And the brain was so fuzzy and foggy I didn’t have the mental clarity to start walking. First, I needed to start healing.
Should you be reading this because you know a sick person, my word to you is this: be gentle. That person is going through more than you know, probably more than you can imagine. I found myself so sick, so disillusioned, my brain so covered in a haze that often I just lay in the fetal position, feeling hollow and empty, tears dripping-or-not, being unaware of exactly what was wrong because everything seemed wrong.
Be gentle; gentle in words, in manner and in approach. Ask questions about their needs, knowing they may not have an answer. It’s normal. But still, invite conversation if the person is up to it. Chat about the ways various things affect them, how they are feeling, any new patterns they are noticing about sleep, food, reading, etc. Take note of patterns and triggers. But mostly, just be there to keep the person from feeling alone. Help provide the simple things…like a listening ear, doing laundry, cleaning or preparing good food.
And there may be times that sick person does need a rebuke, to be told that they are coming across rudely or snappishly. If they are hurting or crossing your boundaries, its totally appropriate. I remember a rebuke or two sent my way for my attitude or self-focus. My brain was so foggy and fuzzy I was unaware of the manner I carried. Sometimes, I needed someone to make the connections for me. (Even today, my man knows when I’m tired. Apparently my voice loses all expression, goes blunt and flat. I’ve begun recognizing those times, but it does take conscious effort).
Listen, be gentle, directly rebuke if needed and make certain you have a support system and life outside of that person. You’ll burn out if you don’t. Or you’ll grow weary of talking about constipation, meals, sleepless nights, etc and grow to resent that person. Keep up on your own life!
And to the sick one: remember there are seasons in life. Separation from others is normal. Its not right, but it will happen. Some will pull back. Some will try to tell you what to do. Some will care and not know how to express it or what to do with you. Should you have a friend who stands beside you, thank God because they are a gift from Him.
Be forgiving. It is difficult to process and understand why everyone is treating you differently. When all is crumbling down on you, it is difficult to process relational issues. If needed, steer away from the ones who burden you down (for a time). If you can, express your feelings to them, that you care but can’t be near. They may get it. They may not. Either way, let it go.
If your case was severe as my own or worse, you may need time away from particular people until your brain is functioning, processing life a wee bit better.
Do what you need to do. But don’t play the victim; be willing to give when and where you can, and if one person wears you down, get help dealing with them. Don’t use it as an excuse but do pay attention to your needs. Give when you can. Don’t if you can’t. And don’t be a snob about it! Keep an open heart!