How Lupus and Divorce Are Connected
Many of my fellow lupus warriors don’t have anyone standing behind them, easing their burden and being that shoulder they can lean on. Though they are in a relationship, they are dealing with their lupus in isolation, pushing through their challenges and pain alone and their facing each fear without the support of the one person who should be their source of strength.
This can be emotionally devastating to someone with this horrible disease, and it can also be dangerous.
The Need for Support
There is one certainty about having this disease, and that is that proper support from a loved one is desperately needed. I did not always have that support, making my road to lupus acceptance a long one; which is precisely why I appreciate and recognize the vast difference in my life now that I do.
I am now married to someone who truly cares about my health and what I must endure — but that was not always my situation.
I was married for more than 19 years to someone who lacked empathy and became outwardly angry when any illness occurred. This was not limited to lupus, and I was not yet diagnosed back then.
But, I could be certain that whatever health issue arose, and there were many that my doctor now believes were lupus-related, I was supposed to keep quiet and keep going.
I did not take proper care of myself because of the repercussions it would cause (fights, anger and hostility directed at me for being so much less than I should have been) and my health suffered because of it. My health issues had to get pretty bad before I would seek any medical help, and the stress of being in this relationship did not help.
I had episodes of pleurisy (where the lining of my lungs would swell), pancreatitis (where my pancreas swelled for no reason), pneumonia, and unexplainable pain in my joints and throughout my body. I would catch the flu and it would take four weeks to get over it. And through it all, I was always “in trouble" for being sick or not up to doing all that I should do each day.
I began to hide my health issues and would drive myself to the hospital when it was really severe. The person who had vowed “in sickness and in health" was always angry about the cost of doctors, medications, and even if I ordered take-out food for dinner because I was in pain and did not feel up to cooking.
I would receive a typed-up bill for all that I cost him. Seriously, I was billed by my own husband for the cost of my food. I was forever a failure in his eyes and that feeling began to take root somewhere deep inside me.
This was certainly not the only reason I divorced, but it is one of many solid reasons I began to dream about being free of that relationship. It was not an easy path to take, though.
I was raised to believe marriage was forever and I was convinced that perhaps nobody could love me because I was such a worthless burden. It took me years to devise a way to leave, support myself and my two daughters and simply believe I could survive on my own.
So, I am here to tell you that if you do not have a supportive partner or spouse, even if it’s just that they lack sympathy and think you should just ignore health issues and “suck it up," then perhaps it’s time to rethink how your relationship works — or if it simply doesn’t.
The Need for Support
When you love someone, you are supposed to put their wellbeing on top of your list of priorities. If your loved one does not do this, then what kind of love are you receiving? And most important, are you not seeking medical help when you should be, simply because you don’t wish to upset them or are worried they will be angry with you for being “sick again?"
I have seen it happen with several of my fellow lupies — in order to keep the peace in their relationships, they try to ignore symptoms and do not seek proper medication. Sadly, I have seen it become very dangerous.
Don’t give lupus the upper hand by ignoring symptoms that are warning you something is terribly wrong. You do not want to end up hospitalized with organs failing, when perhaps preventative treatment may have made all the difference in your battle.
As difficult it is to stand up for yourself in this situation, I am hoping that you find the courage to do so. Borrow mine if you have to. Send me a message and I will respond and talk you through this difficult journey. I have been there and after leaving I discovered I was not the worthless shell of a human being that I was led to believe I was.
You are not alone, even though it feels like you are.
Why It’s So Hard to Leave
Feeling Powerless
With lupus, it is easy to begin to lose your sense of power over your life. It is hard to maintain self-confidence when you feel like half the person you should be.
If the person who “loves" you backs up these feelings by putting you down or not supporting you in this battle, you may find you are in relationship quicksand. You stay where you are because you fear what struggling to get out might do to you, or that you are not strong enough to survive the process of extricating yourself.
What Happens After
Lupus can also make you feel unlovable. Maybe you have gained weight, maybe you feel that you appear lazy (because you have been told you are), or perhaps you just can’t imagine ever starting over with another relationship — I mean, you are always sick and your hair is falling out, that’s super sexy right?
Basically, nobody with lupus wants to go through this challenging life alone, so you rationalize that what you have is better than being alone.
Health Insurance and Medical Costs
This was huge for me. Until I found a position that offered good health care coverage, I did not leave. I urge you to seek whatever method you can, so that this is not a reason you choose to stay.
Stay for hope, or because the good far outweighs the bad, but do not stay for health care. Find a way.
I thought twice before writing this (OK, maybe four or five times), but I feel my journey happened for a reason. If you ignore your own health because of lack of support and love from someone you should be able to count on, then I hope my words reach you, touch your heart and help you find your courage to expect more.
Ten years later, I can tell you more does exist. My wish for you is that you seek it.