7 Things You Should Never Say

I hope that the more people know about autoimmune, the more people can get tested, and the more people can get helped quickly. I don't know autoimmune better than you, but I just want to share what I knew and what I experienced with autoimmune suffer. My purpose is to bring the knowledge so we can understand them (Autoimmune Suffer) better. That's all they need.

Here, 7 things that you have to think twice or maybe better to not mention to people who suffer with Autoimmune:

1. It's all about your mind. If you think you are sick, then you'll be sick. Try to be more positive about yourself.

The sickness is in their blood, in their immune system. Even they have the most positive mind, it doesn't change their condition with autoimmune.

2. My best friends cousin has Autoimmune and she's doing great or my best friend's cousin passed away from Autoimmune.

Autoimmune is a chronic disease. It affects everyone differently. And you cannot compare one to another. They are dying every day. They are fighting every time. The thought to die one day because of this disease is the worst thing. So, it's better to not mention that.

3. But you don't look sick, so it can't be that bad.

This is the most frustrating comment for the people with autoimmune. They feel the pain so real in their body but people cannot see the pain.

4. Maybe you have to do more exercise so you're not always feeling sick.

They are sick. That's the only reason why they always feeling sick. Nothing to do with exercise. Even minimal activity can cause flare up.

5. You're over exaggerating. It could be a lot worse.

The pain is unbearable for people who suffer with autoimmune. Please, believe them when they said they are in pain and sick. They just try to explain what they feel. That's it.

6. You don't get out enough.

Do you know the sun is dangerous for people with autoimmune? They are not allowed in the sun. Some medications forbid them to be in the sun. The sun causes flare-up and condition to worsen.

7. You don't believe how tired I am.

People with autoimmune always feeling tired. They can't even do what they plan because this sickens so unpredictable. In knowing that autoimmune is unpredictable may help other people understand their physical and emotional ups and downs as well as the changes that they may have to make to schedules, plans, and commitments.

Day By Day

Have you ever had a toothache, and not been able to get to the dentist for a couple of days? In that situation, you are always distracted, whatever else you do, you are aware of your tooth. Something as small as a single tooth can affect every part of your life until it is fixed. Now imagine what it is to have that pain, not just for a few days, but permanently. This is what it's like to live with pain as a symptom of a chronic condition.

For me, pain tends to be in the joints on my left side – especially my shoulder, wrist, thumb, hip, knee and ankle. Doctors can't explain to my why it's these particular joints. I do have some relief from pain – drugs can control it some of the time. When it's not under control, like the toothache, the pain is impossible to ignore.

We're always told that pain is a sign of something wrong. For some people, pain is just the way things are. We have to make the most of life, no matter how bad the pain is at the time.

My first task in the morning, before I get out of bed, is to work out which parts of my body are hurting and how much, so I can plan how I will handle my day, taking into account the limitations of pain. For me, pain increases with fatigue, and fatigue is just a normal part of autoimmune. So if I am tired at the start of the day, I know my pain levels will be worse along with my fatigue levels.

For many people, a week of pain is something horrible. For me, a week of pain is “normal”, and a week without pain is something to celebrate.

I always carry my day's pills with me. If I am away from home longer than expected, and can't access pain control I could be in serious trouble.

The things that help control pain for me are: medication; anti-inflammatory; rest, especially making sure I have my afternoon nap; gentle stretching exercises, as long as I'm not in severe pain; long soaks in a warm bath. Massage is sometimes helpful, sometimes makes things worse. Attempting to control my weight should take stress off my joints and help with pain control, but this is complicated by pain making exercise difficult.

Is there an upside to this? I have learned to treat little things as precious. If I can't manage a garden, I can put some herbs in pots and enjoy them. Going out for a coffee with friends is a major effort – but having made the effort has makes it all the more precious to be able to do it.

But You Don't Look Sick?

My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real. 

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 

My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all. 

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. 

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Indra's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. 

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. 

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it. 

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. If I can stand the pain, regular massage can help, at least temporarily. Massage is sometimes helpful, sometimes makes things worse.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going. 

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else.

When you have an invisible illness, it's hard to explain to someone who doesn't have a clue. It's a daily struggle being in pain or feeling sick on the inside, when you look fine on the outside.

What Do You Do When You Feel Like It's The Worst Day Ever And You Want To Give Up?

I've had them, and I bet you have, too. Those days when everything feels way too hard, like every small task is Herculean, like the world is out to get you, like nothing on Earth will ever be right again. 

The days when you think it might just be easier to quit work, go on disability, and stop caring about your career. 

The days when you feel utterly alone. 

The days when no one—not your family, your boyfriend, your bestfriends—can make you laugh, because there's not a damn funny thing in the universe. 

The days that feel like a horror movie.

The days when you turn out the lights, curl up under the covers, and sob yourself to sleep.

The days when you Google your conditions endlessly, hoping someone has come up with a magic fix.

The days when you feel like it's not worth trying anymore.

The days when you just don't care.

The days when you feel like it's not worth it.

The days when you feel like giving up.

I've had those.

Meditation

When I was young, I had zero interest in meditation. It was constantly mentioned in the context of achieving enlightenment, especially in Buddhism, my previous religion. Whenever I hear the term ‘meditation’, the immediate mental association was people who had severed ties with mainstream society and were living solitary lives in pursuit of enlightenment. People like monks, priests, martial artists and hermits.

Not only that, meditation seemed pretty boring and useless. The thought of just sitting at a spot, doing nothing, by myself, in my own world, seemed like a total waste of my time. There was no immediate, tangible output I could associate with meditation. Why do that when I could be actively doing something with tangible, concrete output?

After years of putting this off, I finally decided to give it a trial and see how it works out. If it was really beneficial, I would keep it as part of my daily routines. If it wasn’t, I would have learned from the experience. Lately, I have been meditating as part of my daily schedule. In the first day I did it, there was a subtle difference – not really noticeable, and perhaps arguably attributable as a placebo effect. However, as I continued to meditate the days after, the benefits became apparent. I experienced clear changes within myself (my thoughts, my emotions, my inclinations), as well as my interactions with the world (my view of reality, my reactions toward external events, etc).

With meditation, you begin to live fully in the present moment. This lets you react better to the situations around you. It includes being more focused, efficient, attentive and receptive. You maximize every moment of your living life by living in the present moment. You stop getting caught up by what happened in the past or what might happen in the future. People who are not present are often bogged down by many other things on their mind. They are too busy handling the thoughts in their brain to function in their full capacity in their present moment.

And how often do you clean and tidy your room? When you don’t housekeep your room for an extended period of time, there will be so much dirt accumulated that it becomes an unpleasant place to live in. The air you breathe in will be unclean. The things will be untidy and disorganized. You can’t get things as productively as before.

Imagine your body as a room. Every day, there is lots of junk that gets piled into ourselves – our mind, body, heart and soul. These junk come in the form of negative thoughts, emotions and energy. They can come from all sorts of different sources – the media, interactions with people, our environment, our work, or even self-generated from within. If you don’t meditate regularly, these junk accumulates over time inside you. You become a living trash container with junk thoughts and emotions. Ever have occasions where thoughts seem to spring out of nowhere in your mind in a time when you do not require them? Occasions where negative memories crop up and you didn’t want them to be emerging? These are all part of the clutter that you should be disposing of, but haven’t.

During meditation, you clear all these junk out of your system, just like you cleaning out your room. You expel the negativity and return it to the earth to be converted into positive energy. In the end, you are no longer bogged down by them. For people who don’t meditate, it takes a longer period of time to remove all the compounded negativity from the past. But just like cleaning a very messy house, all it takes is slightly more time and more effort before all the mess is eventually cleaned out.

After my regular meditations, it made me realize how noisy my previous ‘unmeditated’ mind was and I was not even aware of it if I hadn’t had this benchmark for comparison. This is a state which you can only experience for yourself after you start meditation.

PS: Bermeditasi bukan hanya mengambil sikap duduk dan menenangkan pikiran, tapi ada langkah-langkahnya bermeditasi dengan benar, sikap duduk yang benar, kondisi tempat untuk bermeditasi, suasana hati dan keadaan tubuh, dll. Saya menyarankan jangan bermeditasi dengan pengetahuan sendiri, bergurulah dengan ahli meditasi yang “benar”, benar disini adalah meditasi yang tidak mengarah kepada meditasi demonic dan sebagainya, tetapi meditasi yg bertujuan untuk kesehatan, ketenangan, dan sebagainya yg positif. Saya sendiri belajar dari ahlinya Chan Meditation, Master Guo Yan dari Dharma Drum Mountain. Selamat bermeditasi :’)