Life with an invisible illness to anyone that doesn’t live with one is impossible to understand.”
How can people who have an ordinary well functioning immune system possibly understand what life is like? The answer – They can’t.
1.) We are constantly in pain.
This is not the same pain that “none spoonies” have. It is an agonizing pain, that prevents us from socializing or going to work. We might not be able to stand up or sit down for long periods. We struggle to understand the pain ourselves sometimes. For me my pain normally starts in the tops of my legs and depending on various factors, it can spread down in my lower legs, or into my back, and on a really bad day, it will spread everywhere.
I can’t really describe the pain I get. Sometimes it feels like I have bugs crawling in my legs other times it is a constant ache and sometimes it is a burning pain. I have been backward and forwards with various aches and pains throughout my life to the Hospital and Doctors.
Some times the pain has meant I have been on crutches or had to use walking aids to help me. I also had to have 3 weeks off work recently for an unexplained pain in my foot. I have in the last month been diagnosed with Fibromyalgia. Although this is not good news for me, in a way it feels good knowing that my pain is not all in my head and I am not imagining it. Yay, I am not a Crazy Person!
2.We bruise really easily.
This isn’t great for someone like me who is very accident prone. I am constantly falling over or banging into stationary objects. Doors and my feet are two of my favorite trip hazards. This means when a new bruise comes I am used to it, but I am constantly being asked: “Oooh have you seen that bruise there?.” – Yes thanks for asking, I have!
3.) Our tiredness is NOT laziness!
The big problem for “spoonies.” is the constant tiredness. It is not laziness! despite what people like the ridiculous Katie Hopkins and other arrogant people who think we can control our weight, by eating less and moving more, will tell you.
I have lost friends because of my fatigue. Sometimes on a bad day, I can go to bed at 9 pm and not wake until 3.30pm, and even then I still only feel like I have had 30 minutes restless sleep.
I want to go out and be with my partner, and my family, and friends, but most of the time it takes ALL my energy just to get off the sofa or out of bed.
This one does not need much explanation. As someone who has been diagnosed with IBS since I was a teenager, and most recently diagnosed as a Celiac. Toilet trips are a problem for me. Sometimes it can take me ages, other times not so much!!
This is very embarrassing, especially in situations where we are not in the comfort of our own homes.
I remember a time when I was about 18 or 19 years old. I had gone out to a nightclub with friends. I was having a great time when all of a sudden that familiar feeling in my stomach reared its ugly head. The cramping and pain. I needed to go but the queue for the girl’s bathroom was absolutely chocka! – “What do I do!”
I kept thinking to myself. I stood in the queue and just prayed silently in my head for the queue to go down quickly. Fortunately, it did, and I got in the cubicle and did my “business”. However, there were at least 15 girls still in the bathroom checking their hair and makeup. I had been in the cubicle quite a while and was in pain. Then, one girl banged and kicked my cubicle door, and very loudly and very “bitchily” said “WTF you doing in there, have you died?” and laughed!. I said nothing. I didn’t want anyone to know it was me in there, so I lifted my feet off the floor and balanced them on the door so that if anyone looked under the door they would think the door had just locked from the inside and no-one was actually in there.
I wished I had have died, to be honest, I was absolutely mortified because I knew that I was still going to be a while, and the cubicles did not have separate walls. meaning if they had wanted to, the girls could have gone into the neighboring cubicles and peered over into mine.
I kept still and didn’t make a sound. I was so concerned that someone might have heard me breathe or worse and then they would know I was in there. I honestly wanted to fall down the toilet and vanish. Eventually, the girls did leave, and I came out, in floods of tears because of the embarrassment. I didn’t even go back to find my friends. I walked straight out of the club and went home alone. My night had been spoiled. I promised myself I would never let that happen again.
5.) Frequent and inconvenient and most of the time, pointless hospital or Doctors visits.
This is a huge bug bear of mine. We can not choose when we are sick. When we are going to catch a cold, or a general bug, that completely shuts our immune systems down, and makes us really ill. We understand that this is really inconvenient for our employers (for those of us that are still managing to hold down some form of employment) but we can not help it.
6,) We will have time off work!
We wish we could schedule ourselves around normal life, but it does not work like that. Sometimes it happens when we are out having “fun” and we have to go home, or go to the hospital in the middle of a family do!. We can only apologize.
We know, hand on heart how annoying it is. However, think how bad we feel being the person that keeps going to hospital appointments and being told,” you are fine!” or “just take some antibiotics and go home”, or “keep your fluids up””.
We are the patients, and we know when we do not feel right. Trust us, we want to be in the hospital or GP’s office, even less than you do.
Especially seeing as many of us, lost faith in the medical profession a long time. Of all the “spoonies” I have spoken to, it has taken them ages to get a diagnosis at all, and even when we are being monitored, and have researched what our optimum blood levels should be, the Doctors still tell us, we are fine!.
My hyperthyroidism was discovered purely by accident. I had been told from a young age, that I had a virus in my blood similar to ME but I was going to have to learn to live with it!
When I was told I was border line LOW thyroid. Then when I moved Doctors, the nurse as a routine exam, checked my pulse and asked “have you run here?”, I laughed. I had driven and had been sitting in the waiting room for 20 minutes. She repeated the test and my pulse rate went up. They referred me for a blood test and called me into the Doctor the same day. I had Hyperthyroidism and Graves Disease, and my levels were sky high, which if not found when it was, could have killed me.
Hang on a minute though, had I not been told a long time ago, I was border line LOW, not HIGH? Maybe if the medical profession had monitored me more closely when I was younger, I would not have ended up as ill as I was.
I was also diagnosed with IBS from about 15 years old. I was given muscle relaxants for the pain and constipation and told that nothing else could be done.
Hang on a minute though! – This month, I have just been diagnosed with Celiac Disease! Again, this is sounding like a familiar story. Maybe if the medical profession once again had monitored by stomach aches, and multiple trips to the hospital in agonizing pain, I would have been diagnosed with Celiac sooner and not spent most of my life with crippling stomach pain.
If my Celiac had been diagnosed sooner, it may have prevented my Thyroid from malfunctioning in the first place, and I might not have had to have had it removed. The reason I say this is there is a strong link between Thyroid and Gastrointestinal Problems.
It might also have meant that my Gall Bladder might not have started producing Gallstones if my Gut was working properly and I was not eating Gluten. I might not have needed to have my Gall bladder removed! I am due to have a gut biopsy soon, so hopefully, there has been no lasting damage caused by Celiac not being found sooner.
7.)We are still human beings and the people that you knew before we got sick.
Do not forget us.
Keep asking us out ( we will probably not come anyway, but still keep asking. One day we might!)
If you do not understand something, ask us! Sometimes we do not know how to explain it very well ourselves, but we will try.
We know we can be pains sometimes, but we are still the people, the family, the daughters, sons, friends, and partners that you love! We just have an underlying problem that we can’t get rid of!