Thursday, May 26, 2016

5 Wrong Things to Say to Someone With a Chronic Illness or Disability and Alternatives

When people find out you have a chronic illness, a comment usually quickly follows. Most of these comments are meant to be either complimentary or encouraging, but that might not be how they come across. Below are some of these comments that most people with a chronic illness or disability do not like hearing, and alternatives to them that you might like to say instead. Remember, "Be sure to taste your words before you spit them out.". 

1. "But you're so young"
I can't believe I'm writing this, but an actual licensed doctor said this to me yesterday. How did I feel when she said this to me? Confused. This is someone who clearly should know that chronic illness doesn't discriminate. Autoimmune diseases especially tend to come in bunches. Yes, it can definitely be devastating to be ailing in the prime of your life. But saying this to a person makes no sense, and also has no value. 

Instead try: "I'm sorry you're going through this at such a tender age."  

2. "But you're so pretty'
Since when does something so trivial as looks come into this? This is as if because a persons genes caused their face or body to be aesthetically pleasing to you that they are immune from all illness or from any injuries. Now that would be nice, but it isn't the case. And what does this say? That it's fine if people who aren't aesthetically pleasing to your eyes has a chronic illness or disability? And that it's so much more upsetting when someone good looking is sick? This may be meant to be a compliment, but it is full of ignorance.

Instead try: Maybe just don't say this one, or tell the person they're pretty without relating it to their illness. 

3. "But you don't look sick"
Many illnesses are called 'invisible' for a reason; you can't see them! A person may look perfectly healthy but be fighting something life threatening. They also might be feeling completely awful but be doing everything they can to look their best. Their face may be caked in makeup to hide their pallor and dark circles. They may be putting on a huge smile that isn't quite genuine at the moment. They might have a port under their shirt that delivers life saving medications. This may be surprising to hear, but many sick people do not look sick. This doesn't mean they aren't!

Instead try: "I know you're probably not feeling well, but you look nice!"

4. "I wouldn't be able to live with that"
*cue the sarcasm* Well that's nice and very reassuring.  This is another thing that might be said as a compliment to our strength, but also has another meaning. That meaning is that our lives must be miserable. No one likes living with an illness or disability. It's definitely not a party. But not only can we adapt, we can thrive.

Instead try: "You seem like a pretty awesome person."

5. "I'm sure you'll be fine"
This is actually meant to be reassuring, but can be so false, and can also make it feel like you're trivializing the pain of the person you're speaking to. Not every chronic illness has a great prognosis, and not everyone will be fine. This also may not be helpful to someone who is unsure of their prognosis and what tomorrow might hold for them. Apart from that, this comment completely undervalues the extent of ones suffering. Don't get me wrong, optimism is great, but there are far better things to say that tells the person that you sympathize with what they're going through and that you understand that it's serious.

Instead try: "I hope you'll be okay and will be sending good thoughts your way."

Sunday, May 22, 2016

How to Survive Being in Diagnosis "limbo"

If you're reading this, maybe the title struck a chord with you. Maybe you're stuck in this gray area of "undiagnosis". And you're probably completely fed up- and you're right to be. Now before I dive in, I'll tell you that you may not share the same view on this as me, and that's okay. All I can do is hope this reaches someone at a time when they need it. 

My personal story is long and I won't go into too much detail, but after 3 and a half long years of searching for answers for my debilitating illness, the search is looking like it may be coming to an end. I recently found out I have a medication-induced movement disorder and endometriosis, and the relief that comes with answers is inexplicable. You feel validated. You feel like doctors understand your pain. You can look back on all those times you thought maybe it was just in your head and know that it's real. And the feeling of having no answers is the complete opposite. You feel unheard. You feel like no one believes you, and worst of all, you feel like you don't believe yourself. While I was undiagnosed I read many stories of people all around the world who went undiagnosed for years who finally got their answers. I never thought I would be one of them. I definitely felt like I was doomed and that I was going to be sentenced to a life with a body that had gone haywire for no reason. And then, out of nowhere, after one of the worst weeks of my life, answers came by complete fluke. An unfortunate series of events led to what felt like a miracle.

I'll share a few things that my friends told me that helped me through diagnosis "limbo":

1- Trust the universe. The universe has a funny way of working things out when you least expect it. I have a great friend who always reminded me of this throughout all of the turmoil that came with being undiagnosed. When you least expect it, maybe someone will walk into your life who will connect you to someone else who will be the answer to everything. Or maybe one of your millions of tests will finally be the one to reveal something. Gabrielle Bernstein, a motivational speaker, once said, "The universe is always working on our behalf, but not always on our time." And that leads me to my next point. 

2- Good things come to those who wait. Being patient is probably one of the hardest parts of being undiagnosed. Prior to getting answers, I saw a quote by Aristotle that read “Patience is bitter, but its fruit is sweet”.  I don't know about you, but for me a good quote can really put things in perspective. Now this whole "patience" thing is way easier said than done. I know that. But you should be proud of yourself, because enduring all this waiting while you don't know why your body is failing you is excruciating. Being patient is excruciating. But hang in there, because answers WILL come.

3- Lastly, don't be too hard on yourself. You didn't choose this. No matter what the cause is, this is not something that you wanted for your life. You are not to blame for any of this. An illness is to blame, even if it doesn't yet have a name. Trust your body, and if you feel that something is wrong, be your own advocate without hesitation.


Wednesday, May 18, 2016

The Beginning...

Hello reader,

My name is Michelle. And I guess this is my blog. Or what I hope is to become my happy place.

I've always said I like to write blog posts in the hopes that what I write resonates with someone who is going through something similar to what I've been through. Also, because I enjoy writing. It's a perfect outlet, and it makes my grandmother happy when I write. And keeping our grandmothers happy is a must.

So here I am. To learn a little more about me and my blog, I'll answer a couple of questions you may have.

What chronic illnesses do I have? I've had Type 1 diabetes since the age of 12. Since then I have been diagnosed with Hashimoto's disease, Endometriosis, and a medication-induced movement disorder that causes ataxia, a tremor, and difficulty with walking. This took a long and painful 3 years to diagnose! I also fight a mood disorder and advocate for mental illness! But these things do not define me. They definitely put a struggle in my day to day life, but there's a reason I put the word 'triumph' in my header of this blog. Because that's what this is about; defying the odds.

What will I be writing about? I plan to write about my chronic illnesses, as I love to raise awareness, but I also plan on writing posts about coping with the trials and tribulations that come with these illnesses. This will include personal stories and tips and tricks. I will definitely be writing about my cat, Big, who is my true sidekick, as well as beauty products, pop culture, and general ramblings about life!

Thank you for coming on this blogging journey with me,