10 Reasons Talking to People Is Challenging as a Woman With Chronic Illnesses
It is a very difficult and challenging thing to have to admit that I have reached my 40s and now find it very challenging to talk and interact with others — even with other people who may have a health challenge. Here is why…
1. What should I talk about? Very little changes in my life these days, so even though it may be many months, or even years, since I have spoken to someone, regardless of who they are, I find myself unable to offer much new or exciting news. My life has become something like Groundhog Day these days. Not many people want to know how routine my life has become and that I rely on many routines to help me get through the days. Because very little changes from year to year, many people don’t want to hear this, so I don’t tell them.
2. My life is not very exciting to others. I don’t consider that many people would find my life very exciting anymore, compared to the dynamic and hectic life I once lived. I am not climbing the corporate ladder, studying at university or running projects all over the world. However, I have learned how to take great joy in the little things that my life now revolves around. I love my garden. I love my furry children and I love the time I spend with hubby. Any time I get to spend in the garden or even taking a short trip to a coffee shop means the world to me. But I am well aware how boring this may appear to the rest of the world, and that can also feel very sad and sometimes embarrassing when I feel someone may be judging my life, so I try not to talk about it.
3. Everything I do now takes enormous effort. Yes, everything does, even things like talking! Thirty minutes spent interacting or talking to someone is so taxing on my lungs, my concentration, my autonomic system and my organs. I can feel physically exhausted just listening and giving someone my full attention. I mostly listen to people these days because I don’t have a lot of exciting things to share, but even listening can become very tiring and I still don’t know the most polite ways which to warn people that I am becoming too tired and must take a break.
4. If I am struggling with a flare, I simply can’t spare the energy. I simply can’t afford the extra energy needed to talk when I can barely eat, sleep, breath, swallow or move. If a flare lasts for several months then I will be battling every single day and cannot spare any energy to communicate or interact with friends, etc. I rely on the internet most days now as I can try and write or post from my bed. But it causes me pain.
5. The three C’s. For a long time now I have had been coming to terms with the following factors: 1. I didn’t cause this. 2. I can’t control it. And 3. I can’t cure it. This is not something many people truly understand and I don’t really want to explain it over and over. I am now at a point where I think any real friends or loved ones will have done some reading, research or investigation to educate themselves in the basics of autoimmune diseases, so I don’t feel like I should have to explain the above or justify it continually. It’s been nearly 10 years now so I don’t think it should be news to many people anymore. So anyone who doesn’t know more clearly doesn’t want to know more, and that is about them and not me. This is a very difficult realization and can take some time to accept.
6. I actually don’t enjoy talking about my illnesses. I find them just as boring as many other people do. I have had to live with them for so long that I am sick of talking about them. I am “over it” as they say. They have taken over so much of my life, so I don’t really want to talk about them, too — which, again, leaves very little left for me to actually talk about. Because I am worried people will consider that boring on top of everything else I must endure, I tend to avoid talking and interacting with people. Blogging has become my way of giving back and supporting all those who are suffering, but it’s not easy to do and it can be very, very tiring. I keep doing it in the hope that I am doing more good for others than harm to myself.
7. I still want some privacy. Just like a doctor takes an oath of privacy about their patients, I like to keep my bodily functions (and non-functions) to myself, too. I still feel I have the right to keep my tests, my pain, my side effects, my disease progression and my incapacity private, even among the rest of the autoimmune community, too. I don’t feel I should have to answer any and all questions everyone might ask, especially since some of these things can be very painful and emotional to me still. I share what I want to share. But I am keen to keep private what I want to keep private as well. It’s a fine line, but because I don’t want to offend anyone, I do my best to walk that line with great care and courtesy.
8. There are many embarrassing things I go through that I don’t want my friends and loved ones to see. Call it pride and vanity, but how many people out there would want to be embarrassed in public? Not many! My husband no longer feels embarrassed when I start shaking (tremor), throwing up or, without warning, wet myself, bless him, but I still feel embarrassed! I still feel the hot, burning shame on my cheeks when we are out and something unplanned happens. I am glad my husband understands that diseases can cause many awful things to happen, but it’s different if it is happening to you. If I suspect that any of these embarrassing things are likely to happen I will avoid being out in public. It is ultimately me who has had to endure the looks of strangers, or the whispers and being treated as though I am mentally affected, so I don’t seek out those situations unless I absolutely have to.
9. I feel this pressure to always sound upbeat and positive or else people will label me as weak or depressed. I think this is a very common phenomena among the long-term ill, where they feel required to spout “positivity” to anyone and everyone or risk being ostracized by the rest of the world. However, some days I don’t feel upbeat, cheery or “happy happy joy joy!” but I consider this normal and human. I have my “poor me” moments, but I have learned how to understand them and not let them control me. If someone was sad or angry about a bad day, a bad job, a bad boss or bad relationship, then it would be completely acceptable for them to show an emotional response to these events. But the chronically ill are not always allowed this courtesy or we may be labeled and judged.
Some days I get sad about what my illnesses are doing and what they have already done. Some days I am quite emotionally raw. Some day my drugs (steroids) will bring these emotions very close to the surface, which is a known medical side effect to steroid use, but they also offer me relief from breathtaking pain so I must dance with the devil and hope the emotional roller coaster will not be too hard. I consider myself normally a very happy, kind, creative, intelligent, caring, loving and humorous person most of the time, but I also allow myself to be human. I allow myself to grieve when I need to.
10. I have to take naps now. I need my Nana naps, without fail. So if someone calls when I am resting, I simply won’t answer. I need those naps so I can go on; it’s that simple. Sometimes I don’t sleep at night due to pain and that means I may be just too tired to interact, so I rest. I must rest and so I have learned to listen to my body when it is exhausted and needing of rest or I will pay a heavy price for ignoring it.
These are a few of the reasons that interactions are very difficult and not well-understood by those who are not around me day by day. Those who knew me before have the hardest time of all as they cling to their memories of me, who I was and what I was able to do. I feel worse for them, but I can’t let that stop me from doing what I must in order to get by now.
Diseases changes us and it has changed me, but I do still love people and I am trying my best to be able to interact however and whenever I can. I keep trying as much as best I can because I love them all so much.
What can others do?
1. Try and recognize and come to terms with the fact that life has changed for me. Just like someone who may have had a baby, their lives have changed forever and we must adapt as best as we can. Chronically ill people are trying to adapt as best as they can and we need you to adapt, too.
2. Understand that if we don’t answer your call or emails we are likely not trying to avoid you, we are simply trying to care for our health. We return your calls when we can, so please be patient.
3. Be mindful that I may only be able to spend a shorter amount of time talking or interacting with you. This doesn’t mean I don’t love you, it just means I am tired and may be struggling. It might mean I have to keep contact brief but try to enjoy the time you do have, and remember quality is more important than quantity.
4. Ask the chronically ill person if they are getting tired or in pain. It helps to show the person that you are considerate and respectful of their needs, too. If they are getting tired or in pain it might be useful to suggest alternatives to interacting in the future i.e.. “I will email or message you with the details and I will let you rest for now” or, “Shall we meet again another day when you are feeling stronger?”
5. Don’t take it personally or as an insult if we change our plans because our health or energy has changed. Remember it is hard for the chronically ill person, too, and they don’t like missing out, either.
6. Try and work out an alternative messaging routine i.e. text or social media, to keep in touch and share news or events. Sometimes a little message that says, “I am thinking of you” is special in its own way and can make a big difference to both of you.
7. When you are able to interact, remember there is never a moment that doesn’t hurt or is challenging in some way, so savor every moment. We may do our best to hide our pain and challenges, but it is likely always there. We work 10 times as harder to be part of your lives and interact because we love you and care for you. Please remember that above all.
8. Your love and friendship is what keeps us going sometimes. We may not see you often but we treasure every moment.
Follow this journey on Autoimmunitygirl.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.
Trish spent the bulk of her career in IT in various roles and studied law and psychology at university. She got to travel within her career and meet wonderful people in various parts of the world, and she enjoyed that as much as the work itself. She became medically retired in 2010 after being diagnosed with autoimmune illnesses and now live at home with her full-time caretaker and husband. She began blogging and advocating for autoimmune illness in 2015 as she wanted to help raise awareness of autoimmune illnesses and challenges and also to help unite the autoimmune community with hope and dignity. She has been fortunate to meet some wonderful, brave and courageous people in this time and she hopes she will continue to help build a strong and supportive group all around the world.
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