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I love to people-watch. It is one of my favorite things to do. Sometimes, I will ride the bus downtown for no other reason than to just sit and watch people as they walk by.

 

One day, while I was people-watching downtown, I noticed another person, sitting on another bench, watching people stroll by just like I was doing. No crazy revelations here. People-watching is an enjoyable activity, so it is no surprise that other people besides me do it. But seeing someone else doing it got me thinking. What would someone think if they saw me walk by? I mean, to an outsider, I must look pretty normal. I have a healthy-looking, fit, and vital body. It’s nothing like what most people would imagine an ill person to look like. I know if I saw me walking by, I certainly would not think I was suffering in any way, shape, or form. But that would often be far from the truth.

 

I can remember so many times over the past few years when I have been out in public, feeling as if my world was coming to an end, and the rest of the world around me was just humming along at its normal pace. Here I am, going into survival mode, reasoning with myself and dividing up simple tasks like grocery shopping into smaller, more manageable chunks. I try to survive by taking tiny steps and only focusing on a single task at a time. And meanwhile, there are all these incredibly normal things going on around me. A mom and her child argue about which cereal to buy. A clerk and a customer have a conversation about which apple is in season. A couple buys a six-pack and rents a movie to take home for a night in. There is a major contrast between what I am experiencing and what the rest of the world is experiencing. When this happens, I feel a jeux de position to the world around me. All the normalness seems so foreign to me. Yet I am right there next to it, almost able to relate to it.

 

Sitting on the bench downtown that day, I began to wonder how many people walk by me in this state of survival. How often am I the one on the “normal” end of someone else’s internal survival mode?

 

This got me thinking about how invisible illnesses should be treated. What are you supposed to do to help someone in this state? It is not like you can peer inside every single person who walks by you and see how he or she is feeling. That is why this is such a touchy subject. Unless they reach out and ask for help, as far as you know, they are normal people, going about a normal day’s activities.

 

Yet, so many people with all different kinds of invisible illnesses get upset with the world for not treating them the way they think they should be treated. They rightfully want support, recognition, and understanding. However, they often want that to come organically from the world without ever having to explain their situation to anyone. They want people to innately understand them. That however, is not how this world works. If you do not reach out for help, the world has no way of knowing you need it.

 

At the same time, people with invisible illnesses are suffering and do deserve both recognition and support for what they are going through. Therefore, it is important for people with invisible illnesses to reach out and ask for help from the world. The world is such a kind place, full of amazing people. You will be surprised how much love and support you have from both strangers and people you know. People are there and ready to help you; they just don’t know that you need help until you ask for it.

 

And as a general population, we should not assume that everyone is feeling as good as they look on the outside. We should be ready to jump in and help any and everyone. Just because someone does not look sick, we should never assume that they are not fighting a battle inside themselves. And most importantly, when someone does reach out for help, we must never diminish them or their illness, no matter how healthy they look. Remember, not all illnesses are visible illnesses. It is important to support everyone in this world from a place of compassion and non-judgement.

 

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36 Comments

  1. You are so on point. I have often thought about how people see me. We have full eye view of everyone around us, and a perception of what we see as normal. We cannot see our physical selves in such a way. Others can but we cannot. I have found over the years that while there are people out there who are willing to help when you ask for it, it is often not exactly what you need or are looking for. Most people shy away if you indicate that you are having a difficult time, either because they have enough in their own lives to contend with, they do not know how to offer help, they do not understand, they are scared of getting involved… This in turn hurts a lot, but at the same time makes you stronger because you have to search far within your own self to find the strength to go on with life and make the best of it. Professional help is available and it helps in certain aspects but makes it very clinical, which is needed too. All in all, life is very mysterious. Each one of us has our own issues to work out, adapt to, and to learn from. Not one of us is the same as the other, similar maybe, but not the same. The only comfort is that even though we are all different we can learn from one another by watching and listening and taking from that what works for us personally, as best we can.

  2. This is so true. I’ve often thought about this too. Not everyone can completely understand what someone else is going through, but we can all show compassion and support. Just that alone can help heal someone in whatever form of healing they need. Awesome post!

  3. I have also experienced everything you talk about. I feel as though I am invisible and am screaming for help in my head and of course no one answers, no one hears me. I don’t really know what to ask for other than prayers.

    1. Ask for support and understanding. And ask for it from everyone around you. Sometimes it is nice to know that you have a shoulder to lean on or someone just to vent to. The main point of this post was to convey that people cannot help you if they do not know you need help. If you reach out for help, no matter how small or big, I think you will be surprised at the response you get.

  4. Reading this made me think deeply about my behaviour. I try to plod on as normally as possible and to most people they see me as normal. One day whilst looking around a school with my daughter I noticed how differently I was treated due to my invisible illness. Another child and her parent were also being shown around. The parent clearly had a disability and used a stick. This particular day I left my stick in the car as my daughter is still at the ‘ I’m embarrassed my mum uses a stick stage’. The other parent was asked if she could manage the stairs. Needed a slower pace etc. I was struggling but was not asked this. I was put out by this but after some thought I realised it was my own fault as I was trying to appear normal.I tend not to reach out for help as when I do..particularly with my children.. I dont get help. My daughter is great for an eleven year old and helps a great deal but my sons think as I’m OK sometimes then when I’m unwell I must be faking it. I guess I’m worried other people think that too.

    1. Oh i used to worry about what others thought, but seriously I don’t care anymore. I’ve learned to go at my own pace. At one time i would be angry if my husband walked ahead of me while i slow coached behind, but now I don’t fight it, its OK to let go and do things at my pace. I don’t need to explain myself to anyone. If they can’t understand that’s fine…..I can’t live my life being angry and upset. Yes this is an invisible illness. Those that don’t understand or think I am faking it. I don’t need them in my life. I only want to be surrounded by supportive caring people that don’t bring drama or unhappiness. That’s my motto to live everyday with as much joy as I can.

      1. Love what you said Patricia Smith! I feel exactly the same. I don’t care anymore what people think. I also go at my pace. If people don’t understand, I don’t stress over trying to get them too anymore. People close to you that really care, will listen. But I hate being a Debbie downer and try to stay positive now. I’ve hit some lows in the past battling fibromyalgia and CFS, some really low lows…..but I fight them everyday now. I get up, take a shower, put my make up on, and try to look presentable everyday. Although, some days I feel like death. But making myself get up and move, helps me cope better. Some days, I may only be up for s short time, but at least I tried. I still work full time. It’s very hard at times. But sometimes I’m glad I do to just get out the house and talk to others. I’ve been watching my dad of 82 years being completely immobile. He was once vibrant. He just woke up one day about 2 years ago, and could not walk anymore. I believe he also sufferes from fibromyalgia. But never diagnosed. So I see him sit in a wheel chair or laying in bed, because that’s all he can do now, and I think….this maybe me one day. But not today. I choose to keep on fighting it….and moving.

  5. I used to be my own worst enemy relating to this topic. I didn’t let on at all that anything was wrong with me, mostly because I was in denial myself. I would push on, smile and the fall apart in private. It’s no wonder people couldn’t understand why I declined to go out or suddenly couldn’t do things. Opening up and letting people in has helped me in so many ways and I don’t know where I would be without my support network.

    I think approaching people with kindness, compassion and without judgement is the best way to be. Like you say you simply don’t know what people’s struggle are unless they tell you.

    1. I agree Donna. I went around for many years struggling and feeling miserable, seeing doctor after Doctor basically telling me there is nothing wrong with me. I would ask….then why do I feel so much body pain and exhaustion. This went on an on. After researching and talking to everyone I know about how I was feeling, I finally figured out what I had. Fibromyalgia and CFS. I would then bring it up to doctors….and they still shut me out until I went to a Rheumatologist who then ran many tests and diagnosed me. But I remember walking around in denial for years. I didn’t want this. I was glad to finally have diagnoses and to know I wasn’t crazy, but I hated to admit it. Or I almost felt like it was something to private to share. Or embarrassed that my young body (back 20 years ago), was failing me. When I finally admitted to myself and started to open up to people about it, at first, it felt weird and people didn’t get it. Some did and actually said they knew something was wrong for years with me, but they couldn’t figure it out. And they sort of felt relief that it was nothing personal against them when I had to cancel plans last minute or was quiet and depressed sounding some days when I would see them. But now I openly tell people. Some seem concerned. Some don’t. But I don’t care anymore what people think. I’ve accepted what I have. I don’t like it. But it’s the cards I’ve been dealt and I just deal with it however I need to deal and don’t worry about others anymore.

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  16. I remember as a kid my mum said we should put a bandage on your head then people will know you’re ill (she didn’t do it and never intended to but it was her way of saying she understood). Another memory was being sat on a bus when someone wanted me to stand to let an old lady sit, I was unable to and someone else got up for her in the end but because I looked young and fit they assumed I should be stood up, little did they know had I stood for that bus journey they would have been ringing an ambulance by the end of it after i passed out! I didn’t go on a bus again for some time :-)!

    Invisible illness is very difficult to live with but we can’t expect people to just know, we who know how it feels though can be understanding to people and not make judgments and be there to understand when people reach out.

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  19. I have read this a few times now and have taken some time to think about it. This post makes really good points, as I have been both the one to look “ok” and also to assume someone else is “ok”… I think personally, that is perhaps the hardest part of having an “invisible” illness, is that we cannot ever really “look” like we feel. I like what you said about “being ready to jump in and help”… great post! Thank you for sharing!

  20. I was recebtly diagnosed with cfs. I was fortunate to find a doctor who specialises in treating it. I live in South Africa, and the doctor is Belgian/ French. In the 6 months of treatment, I am improving. I have lost the brain fog, I have started visiting again, I can walk around my garden, and go on brief shopping excursions. I work in the mornings about 3 to 4 days a week, and do not have to sleep for 3 hours every afternoon. The doctor treats for tropical bacteria and parasites, which travel with people who travel from tropical areas, and infect other people who have never been to the tropics. Dr Jadin also consults in Belgium. 6 months ago I thought I was dying, I felt so ill and tired. Now I notice small improvements every day, like remembering the plot of a television series.

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