I had my second doctor’s appointment on Thursday. I was going to have my lung test, and then see Dr TL. I was not really well enough to go out. (I never will be anyway.) So I gathered all my courage and will power to get there. The hope of finding something to get out from misery of living with severe ME/CFS helped me getting ready. I had no idea what day I would have and deliberately did not think that I was too sick to sit in the waiting room for long time. Somehow, I optimistically thought that the nurse would give me the test as soon as I arrive, and then Dr TL would look the result as soon as the test is done.
I got there about 15 minutes earlier than I was requested. Then, I was told to wait for the nurse. Like any other Medical Centre, there was no comfortable chair or sofa for sick people to wait. (I still cannot find the reason why.) After a while, I realised that she was not going to give me the test straight away. I didn’t have watch with me and there were no clock or TV in waiting room, I didn’t know how long I was waiting. As she was supposed to finish for the day in any minute, I thought I would not have to wait for her any longer. Otherwise, I would have expressed my concern for waiting due to orthostatic problem to the receptionist.
I was getting dizzy and started to breathing fast. Before I knew, my body was paralysed from weakness and tears started coming out. I struggled taking out tissue paper and forced my now extremely heavy arm to wipe my tears. I wanted to ask for place to lie down, but my body was too weak to move. The receptionist was hiding behind a very high reception desk wall. I was breathing heavy and my heart was going faster. I pushed my heavy arm to wipe my tears. In a crowded waiting room, I was invisible and scared. Nobody asked me if I was okay, or need help. It was also hard to keep my eyes open from weakness, but every time the nurse walked in front of me, I looked at her and begged with my tearing eyes that I need help. But she was avoiding making eye contact with me.
After a long wait, the nurse finally signalled to me to follow her for the test from the other end of the room. I asked her, “I need help.” But I knew that my voice was too weak and nobody can hear me. As I wasn’t following her, she came back and gave me another signal. The receptionist also stood up and said, “It’s for you.” I felt miserable and didn’t know what to do. I just repeated, “I need help.” But they both turned around and did not hear me. Then the guy next to me shouted, “She needs help.” The nurse turned around and gave me one more signal to follow her. She had no idea what was going on and little frustrated that I was not following her. I said, “I can’t move…” The guy shouted, “She can’t move.”
The nurse walked up to me and said again, “come with me.” I felt so ashamed that I couldn’t cooperate such a simple task and burst into tears and repeated “I’m sorry, I’m sorry, I can’t move.” She still insisted me to follow her into the exam room, and finally she realised I could not move. The receptionist grabbed a wheelchair without foot petal and they helped me to sit in it, then, dragged me into the exam room. I was embarrassed and ashamed and just didn’t know what to do except crying. And I was begging with my very weak voice that I needed to lie down.
The nurse asked, “How long do you have Chronic Fatigue?” I answered “very long time.” But, I was shouting inside, “this is not chronic fatigue, it is ME. I’m not having trivia fatigue problem. I’m having orthostatic problem right now because of ME. That’s why I must lie down. Please let me lie down.” Of course, nobody hear me and nobody knew or care about the difference between chronic fatigue and ME. Then she asked, “Who’s looking after you?” I answered, “Nobody.” I noticed she was irritated as my voice was so weak and she can hardly hear me. I was surprised the guy next to me heard me clearly what I said. She asked me one more question. “How do you get home?” “Drive.” (I needed to rest enough at somewhere before I could drive my car home as well.) I asked her that I needed to lie down. But she wanted to do the test, so I blew my breath into the machine. She checked the result and said, “I’ll ask doctor if he need another test.” I begged one more time, “I need to lie down.” But she had left the room already and never came back.
The wheelchair’s back was very straight, or it was slightly leaned forward. I was getting even sicker by just sitting in there. I needed to lean on somewhere but my unsupported head just fell back and it was really uncomfortable to breath. So I forced my body to lean forward, but my body didn’t have strength to support myself, so it completely fell on my lap with my arms hanging both sides. It cut off blood circulation to my legs and I couldn’t even breathe anymore. I felt so pathetic and miserable. There was an exam table right in front of me, but I had no strength in my body to get there. I was feeling extremely dizzy and was blacked out. The receptionist came and tried to straighten my body, but I needed to do it slowly. If I lifted my head that moment, I would have fainted. I didn’t have any sense and I kept telling her, “I need to lie down. I can’t get up. I’m very dizzy…” Then, feeling of shame came back and kept apologising her… Once the heavy dizziness settled, she helped me with difficulty to get me on the exam table and finally I get to lie down.
The room was very cold. I had no control over my body but was shivering uncontrollably. My legs, hip, upper body, neck and shoulder shook violently and my jaws were rapidly shaking sideways. While my body was shaking as if I was having seizure, old lady came into the room with my permission to get oxygen treatment. She may also had dressing for her injury. I still couldn’t turn my head to look, but she was complaining to the nurse the way dressing was done. None of them paid attention to me as if I was an ornament in the room. After she left the room, I was left alone and was shivering from cold and shaking from muscle problem.
After a while, I needed to go to toilet. I was hoping that someone would come and check on me soon. So I waited. And waited… Nobody came. I was getting desperate. I decided to go by myself. I tried to use the same technique I do at home. Roll my body to the edge of the bed. Slowly slide legs to the floor. Then walk to the toilet by leaning on walls. I didn’t think that the exam table was much higher than my bed. I rolled over. I slide my legs to the side of the table. And they didn’t reach the floor. Now my legs were kind of stuck in the middle. I didn’t have strength to pull them back on the table. And my body didn’t have strength to support myself until my legs reach the floor. I started to struggle, try to change angle of my body or push myself to fell on the floor. I didn’t know what to do again and just struggle to stay on the table and I started crying again as it was so miserable and hard. Dr TL walked by the room and quickly grabbed my legs and hoisted them back on the table. I begged, “I need to go to toilet.” But he was too quick to hear me. So I was back on the table safe, but still desperate to go to toilet. I felt I was very stupid.
Dr TL must have mentioned something. The receptionist quickly stuck her head at the door, then turn around and gone. I begged, “I need to go to toilet.” But once again, she was too quick. But this time, she realised I was saying something to her and came back. I felt I was such a trouble maker…, and started apologising. She helped me to sit in the wheelchair without foot petal, and pushed me to toilet. On the way back to the exam room, I noticed the waiting room was filled with people and they were all watching me.
After that, the receptionist checked on me regularly and even gave me some water. I thanked her for her help and kindness and she became very nice to me. She responded, “That’s okay, that’s what we are here for.” I slowly started feeling better. I walked to the toilet second time by myself. And I felt I was lucky to lie in a quiet room in peace, rather than in the waiting room crowded with sick and angry people.
While I was in the room, I could hear what was going on in the Medical Centre.
I heard staff whispering that doctor was talking to child safety agent. I really hoped the child would be safe from now on. I felt for the child knowing what he/she had to go through and how hard his/her life would be to deal with the experience.
Then, there was an angry man who had been waiting for more than 1 and half hour despite he had an appointment. He got even angrier when he was told that the centre was having extremely busy day and had to wait for a bit longer. He didn’t hesitate letting his anger out to the poor receptionist that he should not have to wait as he has an appointment, then, lectured her what appointment means, he cannot be absent from work for such a long time, and he didn’t want to lose his job because of that and kept going on. I felt sorry for both receptionist and this angry man, and for doctors.
There was a cranky lady saying all she needs is a script.
The receptionist was talking on the phone explaining that the earliest appointment would be in three weeks time. I realised that I was getting ’special’ treat as she was squeezing me in to see Dr TL without an appointment. The deal was to come early and wait, then she would squeeze me in. I don’t know what my friend, M told them when she phoned them, but somehow they know that I may not be able to handle appointment well… They just don’t know that I am so sick that I cannot even sit for more than half an hour…
I felt this world is very sad.
The angry man was working hard just to get by. He needs to dedicate all his focus on his job, therefore, making the appointment with doctor must have been carefully planned to make his absence of the work as minimum as possible. From the person who had desperately waiting for an understanding doctor for more than 35 years, waiting to see a doctor for 3 hours is not a big issue (except for the part orthostatic problem makes it really hard) I felt that his employer must understand how it is like to wait for doctors appointment (doctors are always running late). And I hope the man would realise how lucky he is to have supportive doctor and he doesn’t have problem like mine. (Well, I know I shouldn’t speak too soon as I really don’t know his problem. So his problem could be much harder than mine.)
The receptionist is doing her job. Just like the angry man, just to get by. I’m sure it is not her job description to deal with angry and/or abusive patients. And it seems like every patients do not hesitate to express their frustration or anger, but nobody really care that she is also a person with feeling. And what is happening with doctor’s time is really beyond her control.
Doctors are working really hard and intense. They don’t take break between patients. And the queue of patients seems to be endless. People always say that doctors are there to make money. But nobody really think that they also have to make money to run the Medical Centre. On top of long and expensive education and hard working, they have to dedicate their own time and money to keep up with current medicine and researches. Yet, patients are angry and complaining.
And here I am. Being very sick and still being invisible in doctor’s waiting room. Desperate to get help but scared of being ridiculed and humiliated by doctors.
Everybody is doing their best. But nobody cares. It is very sad.
When I finally finished consultation with Dr TL, it was very dark outside. And he still had couple of more patients waiting for him.