I used to see the word chronic a lot before I have lupus. To me, chronic was synonymous to critical, serious, hard to treat, alien-spawning-out-of-a-body-part type of disease. When I started to have lupus, I learnt that lupus is also a ‘chronic disease’, so I looked up in the internet the definition of a chronic disease because it was simply too hard to accept that I might be a mutant. It turns out the definition that I understood previously was not so accurate after all.
Here’s the definition from wikipedia:
A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months.
I did not know that chronic is largely associated with time. Now I understand why lupus is considered as a chronic disease. It’s always there, and will continue to be there, for a long, long time.
It took me some time to accept that I now have a new friend that I am stuck with. Here’s a list of steps that helped me accept my new twin pretty fast.
1. Accept that your chronic disease will be a new part of you
Remember when you were young, you realised that you were going to have a new brother or sister, whether you like it or not? Remember that hard-to-please boss and his unbelievably high standards? Remember that neighbour from hell who always sang that dreadful song in the middle of the night?
Nope. You can escape from these people.
But you will not be escaping from the chronic disease anytime soon.
It did not matter if you wanted it to be in your life, it is just going to be in your life.
When I first had lupus, I had no idea the extent of its impact to my body. After all lupus is your own army going rogue, attacking any organs they thought was an enemy. Sure, I cannot walk properly, I have protein in my urine. Who knows whether my body will respond to the medication and stop attacking my kidney? Will it stop functioning one day? I have seen symptoms from patients in my ward, and they did not look positive.
Accepting the change in my life was the most difficult part of all. I had adopted the approach to expect the worst and pray for the best. The worst scenario could be that I would need to go through dialysis, or may need to undergo a kidney transplant. No, actually the worst case would be death from kidney failure. I thought to myself: What if I died tomorrow? What are my regrets? What are the things that I should have done?
These are depressing questions, but the questions gave me a moment of clarity. My only regret was I wished I had found a man who will not mind about my conditions before I had lupus. That was it. It was strange but instead of feeling utter regrets for not being in a relationship before lupus hits, I begin to see all the blessings and all the good things that happened in my life.
I thought to myself: at this point, loving myself and accepting myself, with lupus or no lupus is more important than that regret that I probably will not be able to change for now. (Strange enough, I found a wonderful man in my life a few months after I was diagnosed)
2. Understand how much your new friend is going to cost you, and seek help from all sources whenever required.
Let’s not kid ourselves, our friend is not cheap. As soon as we could get point 2 sorted, we are on the road to becoming best friends with our chronic disease.
When I first heard of the cost of the alternative drug to chemotherapeutic drugs was RM2,000 (USD480) per month, I was shocked and in despair. The worst part was calling up my insurance agent and hearing her tell me that my insurance policy was not updated with LN being a new critical illness and therefore I am not covered. She asked whether I really had lupus nephritis, because “it is a serious disease”. I remember screaming at her and crying when she lackadaisically told me that I would not be able to claim from the insurance company because I will not be hospitalised and follow-up medications after 30 days are not claimable.
I did a lot of legwork to check if it is covered under company insurance, if HR could help me, if I could afford it myself if all fails. As a matter of fact, I paid for all my hospitalization bills, specialist consultation, examinations etc. myself. At the end the Company HR found out that LN Stage 4 is covered by Critical Illness, which the Company has coverage on, and save me out of the financial debacle.
If you could not afford it yourself, get help from friends and family. Talk to your insurance agent. Talk to your HR. Talk to your parents. Talk to your siblings. Talk to social security. Talk to local support groups.
3. Befriend your chronic disease
This is going to be the second hardest part of this whole chronicle. Yes you probably knew that your alter ego was going to be part of your life. But you have not been able to like it yet. After all, you did not want them to be in your life. Now hold that thought. Put off all your prejudice on why they are coming into your life, and focus on getting to know this new friend. You must believe that they did not come to destroy your life.
So now you have this new friend that you are getting to know. Would it be possible that this new friend actually did bring about some good things or good experience? I know this is a crazy thought, but I do see good things that came along with my lupus.
After I had lupus, I start to see things in a different light.
Before this I always had been in a rut on my relationship (or the lack of thereof), and some of the personal matters. No matter if I managed to lose 10kgs of weight, I managed to travel to different continents, or if I managed to progress in my career. Something is always amiss, and I always had many reasons not to like myself. I believed that I was not good enough, and people did not appreciate me as much because they also did not like myself.
When I had lupus, perspective changed very quickly. Suddenly I realised that actually I have been having a great life so far, and I did not appreciate it as much as I should. When I was sick, I learnt that no matter how far you plan to go, how much you want to do, sometimes the easiest way to happiness, is being contended.
Lupus has taught me so much about life that in my 33 years of life I did not manage to understand. It is now a new friend that I embrace and appreciate.
4. Ask your friend what exercise it allows you to do
When I first had lupus, I could not move around freely without taking painkillers. Diclofenac, Ibuprofen, paracetamol, I took in so much painkillers without knowing the harm they did to my kidney while my kidney was waging a war with my immune system. I traveled around Germany and England 7 hours a day by eating a the max dosage of painkillers everyday.
When I took prednisolone, for the first time since I had the symptoms, I woke up feeling painless and as light as a feather. I was so happy that I ran up and down the stairs, and mopped the whole house. The next day I had joints pain again!
These are not the ways to push the buttons of your new friend.
You need to seek permission from your new friend gradually and incrementally. Try walking for 5 minutes outside for a starter. Then progress to 10 minutes. Then 20 minutes. Try cycling for 15 minutes. Try doing some simple body weight exercise, such as squats, push ups, lunges, sit-ups. Slowly regain strength to go back to your favorite activities. If your friend was not keen with the intensity of the activity, rest and try again another time when you are feeling better.
5. Eat clean and rest well
Eat nutritiously and eat clean. Eat less processed food. I normally skip the middle part of the supermarket where all the processed foods are displayed. I know it is a hassle to prepare and cook your own food, but in long-term your body will thank you for that. For a few months I was eating porridge with all types of fresh ingredients without any seasoning or oil. No seasoning was required because the ingredients had nature flavour and they tasted good too.
If you could not prepare food because of fatigue or body discomfort, prepare food in advance when you are feeling better instead.
Get rest whenever you need it. Give yourself a break. Don’t push yourself too much. Whenever you start to wonder why did you had to have this chronic disease and felt that it is holding up your potential, you need a break. A break from the expectations that you have on yourself because I believe that given your circumstances, noone expects much from yourself anyway. So why don’t you cut yourself some slack?
There, these are the 5 steps how I coped with my lupus. How about you? What would you add to the list? I would love to hear from you!