What Can I Say? –


It is a very difficult and challenging thing to have to admit that I have reached my 40s and 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 do I talk about? – Very little changes in my life these days so even though it may be many months, or years, since I have spoken to someone, no matter who they are, I find myself unable to offer any new or exciting news. My life has become something like ‘groundhog day’. Not many people want to know how routine my life is and that very little changes from year to year. Most people would not 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 or interesting anymore. 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 revolves around! I love my garden. I love my furry children and I love the time I spend with hubby.  ANYTIME I get to spend in the garden or even taking a short trip to the coffee shop means the WORLD to me. But I am well aware how boring it appears to the rest of the world and that can feel very sad and embarrassing when you feel that someone may be judging your life… So I try not to talk about it.
  3. Everything I do now takes ENORMOUS effort – Yes! Even talking! 30 minutes spent interacting or talking to someone is taxing on my lungs, my concentration, my autonomic system and my organs. I can feel physically exhausted 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.
  4. If I am struggling with a flare I simply CANT 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 day and can not spare any energy to communicate or interact with friends etc. I rely on the internet most days now as I can always write and post from my bed; Even in the worst of pain.
  5. The three C’s – For a long time now I have had been coming to terms with the following factors… I didn’t CAUSE this. I can’t CONTROL it. And I cant CURE it. This is not something that many people understand… but I don’t really want to explain it anymore. I am now at a point where I think that any REAL friends or loved ones will have done whatever reading, research or investigation to educate themselves in the basics of Autoimmune Diseases, so I don’t feel like I have to explain the above or justify it any longer. Its been nearly 10 years now so I don’t think its news to many people anymore.
  6. I actually don’t enjoy talking about my illnesses – I find them just as boring as 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…’. They have taken over so much of my life so I don’t really want to talk about them too… which leaves very little left for me to actually talk about; apart from my garden, my furries, my ideas / thoughts and my routine life. 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. My blogging is my way of giving back and supporting all those who are suffering… but its not EASY to do and it can be very, very tiring. I keep going in the hope that I am doing more good than harm.
  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 amongst the rest of the autoimmune community. I don’t feel I should have to answer ANY and ALL questions that everyone might ask… especially since some of these things are very painful and emotional to me. I share what I want to share. But I am keen to keep private what I want to keep private as well. Its 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 perhaps, but how many people out there would wish 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 do! I still feel the hot, burning shame on my cheeks when we are out and something ‘unplanned’ happens. I am glad that D understands that Diseases can cause many awful things to happen, but its different if it is happening to YOU.  If I suspect that any of these 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. This is a very common phenomena amongst the long term ill where they are required to sprout ‘positivity’ to anyone AND everyone or else risk being ostracized by the rest of the world. However, some days I don’t feel all upbeat, cheery and “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, a bad relationship then it would be acceptable for them to show an emotional response to these events… but the chronically ill are not allowed this courtesy or we will become even more ostracized and demonized. Some days I am sad about what my illness is doing and what it has done. Some days I am 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 that the emotional roller coaster will not be too hard. D is also good at helping me stay aware of the affects of the steroids. I am glad he helps me recognize them. You see I consider myself 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. Nana naps. If someone calls when I am resting I wont answer. I NEED those naps so that I can go on… it’s that simple. Sometimes I don’t sleep at night due to pain and that means I may be too tired to interact.

These are a few of the reasons that interactions are very difficult and a 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.

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 you all so much.

Gentle hugs,


2 thoughts on “What Can I Say? –

  1. Besides doing our best what can we do? For me it is the best I know how to do. But Trish I am way over number 8. No one will ever embarrass me ever again about chronic disease. Somehow when I got to be 40, such things no longer bothered me. Ok, maybe 50, no definitely 55. Alright number 8 still applies, never mind.


  2. Another well written post. I can identify with a lot of what you say here too as go through similar feelings often too. You are one brave & awesome warrior to keep going & sharing so much of yourself. There is always some things you don’t want to share & thats your right to.
    Take care of yourself first & foremost.


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