Life Insurance Battle with Muscular Dystrophy

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DISCLAIMER: *TRIGGER WARNING* Some readers may find this post upsetting. This is my personal experience of fighting for Life Insurance with a life-limiting condition and the outcome. Detailing my own progression path with my form of Muscular Dystrophy to help readers understand my predicament, not to frighten others with similiar diagnosises. Please keep in mind that no 2 people (even with the same diagnosis) are the same. All material and opinions are my own. This post is also not affliated with any company mentioned.

I turned the big 3-0 this past September! My Facebook lately has been swampt with ads for Life Insurance plans particularly aimed at parents. It’s the same story, only with a different name and x amount of littles in tow, usually going as follows;

“Hi my name is Annie and I’m the proud Mum of 2 boys. Since being responsible for two little human beings and it not being about me anymore, I wanted to make sure something was in place should I not be here. You just never know what life is going to throw at you…”

The ironic thing I can wittingly pull from the above example when comparing it to my own life as a stay-at-home Mum who does volunteer work, and blogs on the side – is the fact I DO infact know what life is about to throw at me. Scratch that! What life has already thrown at me and then some. If this is the first post you’ve ever read of mine, then by God you’ve picked the wrong one to start with. This is one raw and honestly morbid entry amongst all the sunshine and daisies everyday life I try my best to focus on and promote as a disabled Mum living with Muscular Dystrophy. If you don’t know what MD is, I’ll do a quick brief to prevent Google from boggling your mind.

Muscular Dystrophy refers to a group of over 65 recognised genetic muscle wasting conditions. Each type affects different muscle groups, some are static (in that they stay the same) while others can be disabling or life-limiting. Most follow a similiar path in that they are incurible and you lose ability as the disease advances over time. My form of MD is called Multiminicore Myopathy and is so ultra rare, infact it has only 2,000 documented cases in the world. With only 11 individuals in the UK, which is pretty cool to be rare in the sense I’m unique but it is incredibly isolating at the same time. It doesn’t help that I seem to have a progressed alot faster than the few families I do know. My MD was deemed life-limiting at the age of 6 after I very suddenly lost the ability to walk after a severe bout of pneumonia. As my type is so rare, back in the 90s respiratory weakness wasn’t documented in the very little info that was in medical articles. Nowdays great care and focus is on prevention of Chest Infections/Pneumonias and implimenting Non-Invasive Ventilation as soon as respiratory weakness is noted is part of “managing” the progressive condition. This leads to the problem when trying to gain Life Insurance.

I’m no different to Annie above and all the other parents out there that have responsibly gotten themselves Life Insurance cover to ensure their family will not suffer financially planning a funeral or deal with bills, morgages or whatever financial obligations that’d get passed to them upon their death. I am no different in the sense that I want that same reassurance for my partner and children. Losing a loved one is hard enough without having to lose your home and all you’ve known because financially that person contributed x, y and z. My family deserve to have that reassurance too! Yet sadly 6 years of battling medical questionaires with over 50 Life Insurance companies, even some who have ensured individuals with the same diagnosis (difference being they are more mildly affected) has led to increasing frustrations and heartache that I know that Muscular Dystrophy will eventually take me away from my family. That I can do nothing about but the one thing I can do something about – making sure they’ll be financially OK when I’m not here, insurance companies make damn sure I have no control of either.

Where exactly does the problem lie?

All these insurance companies have the same reel of questions in their indepth medical questionaires that will either grant you cover or not. I’ve learnt after going over them with fine tooth combs with company advisors just where I’m hitting snags and just incase somebody with a similiar diagnosis is reading, I’ll outline them here.

  • My form of Muscular Dystrophy is so rare it is not listed on their list of medical conditions they cover or don’t cover. Meaning they have no choice but to click the closest relative condition, which was often “Duchenne Muscular Dystrophy,” the most common type of MD that affects predominantly males and has a life expectancy averaging 25 years. My form of MD is not listed as “terminal,” but “life-limiting in some cases” yet I was being deemed as terminal because my condition wasn’t there to click as even an option! Automatically disqualifying me for coverage.
  • Listing secondary conditions that my MD causes such as respiratory failure and heart valve disease. Automatically disqualifying me for coverage as this again pushes me into the “terminally ill” bracket despite I am accessing things to manage these secondary/advance disease symptoms. Which then leads me to being disqualified for;
  • Admitting I use Non-Invasive Ventilation (a form of ventilator that supports weak breathing muscles via a nose/full face mask) during the night and when I have a respiratory infection. Putting me again in the “terminally ill” bracket again, YET NIV has been proven to extend the lifes of patients who are respiratory compromised with MD for years to decades.
  • Listing heart medication that controls my tachycardia as a result of the heart valve disease I developed as my MD advanced. Disqualified me from coverage as the medication can only control symptoms not fix the valve weakness.

So as you can see, it has been a journey. One that I didn’t give up on without a 6 year long fight, because it was so important to me that when my time comes my family would not be left in financial strain aswell as emotional.

My advise to anybody recently diagnosed with particularly adult-onset Muscular Dystrophy is to look into Life Insurance before the disease progresses, they will still cover most people if it’s just mobility issues. Once you get into having respiratory and heart involvement, it’s a minefield that is a losing battle. It’s not like travel insurance where you can get coverage if you’re severely disabled/terminally ill but pay extortionately for the luxury.

Last week I made the difficult realisation that no amount of determination was going to get me covered with how advanced I appear to be in my diseases progression and that to secure something, anything in place for my family – I needed to give up the fight and get what I could. What I could get at least was Funeral cover. Unlike Life Insurance, it took just a 20 minute phonecall to set up, I chose Avalon and the gentleman I explained my circumstances to was extremely sympathetic and confided that he’s taken many a phone call from people with “poor prognosises” who couldn’t get Life Insurance so settled for Funeral Cover instead. He did a great job in reassuring me that it wasn’t giving up, it was going at it from a different angle and still setting out with my original goal – to ensure my family is not left in financial turmoil. They now do not have to worry about the cost of my funeral, everything is set – all my wishes, my song and religious choice etc. My loved ones merely have to ring Avalon and say I’ve passed and they’ll do the rest. Although I wanted more for my family, I am now at peace with the fact there’s something finally in place.

Do you or someone you love have a life-limiting condition and have a story to share? Comment below…


 

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