Health, Unveiling Invisible Illnesses

How To Be There For Someone With A Chronic Illness

Imagine you have two people who are not on the same page, let alone the same book. One struggles with chronic illness and the other is averagely healthy and maybe even deals with a common ailment here and there, but how can they relate when it comes to health? It may not come easy to some when they have never had their health jeopardized. It is important to build a bridge to have a connection with your family or friend.

Invisible Illnesses

Perhaps your friend or loved one has an invisible illness. This means that they look healthy on the outside but on the inside they struggle with an illness like diabetes, lupus, PTSD, POTS, Thyroid diseases, Cardiac and Neurological diseases, to name a few.

We all have our own battles.

It can be tough to look at someone who looks fully capable of living life the way you do but we are all different. Understand that just because you may be healthy and can juggle so many tasks, does not mean it comes easy for others.

It is important to recognize that with all things, there is a spectrum. With chronic illnesses, that spectrum can vary day to day. One morning, we may have so much energy that we can clean the house and go out to get lunch but the next morning we may be bedridden.

Personally, putting on makeup every day is my way of putting on war paint. I hide my dark circles from waking up every hour. I conceal the redness in my face or sometimes add blush to my pale skin. When I look well, I don’t get asked if I am sick or told I look tired. I feel normal and ready to take on the day.

Just because you friend or loved one looks put together and seems young and healthy, doesn’t mean she wasn’t up at 4am with severe back spasms and again at 5am feeling dehydrated and again at 6am in more pain and a numb arm until it is finally time to get up for the day. She probably got dizzy a few different times while her blood pressure dropped, causing nausea and tachycardia. Be grateful she answered the phone or showed up for lunch and she we be grateful for you.

The Spoon Theory

The Spoon Theory is a metaphor to explain the limited energy that someone with an invisible or chronic illness struggles with. Say you get 12 spoons each day and each task costs a spoon or two. Sometimes a shower can cost 2 spoons on a rough day. Going to work can cost a lot of spoons as well. Cleaning the kitchen? That will be 3 spoons! Sometimes if you push yourself too hard, it costs spoons from the next day which will leave you in bed with limited spoons.

We call people “Spoonies” who fit in to the Spoon Theory.

How to be there for a Spoonie:

  • Understanding – The fact that you have read this so far is already a huge deal for your Spoonie. Trying to understand what life is like for your friend or loved one shows a lot of compassion and empathy. This is your biggest step and the most important. For some, we are constantly judged, assumed we are lazy, told it is in our head, called a hypochondriac or just straight up dismissed. Certain medical conditions sometimes take up to a decade or longer to get diagnosed. Often times there are several misdiagnosis’s and even people get left in a grey area where no one knows what to do. We feel alone and lost.
  • Keep Your Ideals To Yourself – We appreciate your concerns, absolutely. I can vouch for myself that I have done plenty of research, am fully aware of my body and what is normal for me, have a strict diet with optimal nutrition and supplements, non drinker, non smoker and always staying positive as well as seeing a therapist. My health is a full time job. You can’t even pronounce what illnesses I have so please don’t try to cure me. Of course, we appreciate advice but keep it simple and keep it at that. Do not try to push your ideals on someone or tell them if they exercise more they will feel better or that they can meditate to a cure. All we want is a shoulder to cry on, a listening ear, positive vibes and understanding.
  • If You Are Sick, Stay Away! – Seriously, some of us have compromised immune systems and if you have a cold or flu and bring your germs to anyone, even a healthy person, it is just simply rude. If you bring your germs to someone who is already ill, it is cruel. We don’t fight infections and other illnesses very well and most of the time it makes our other issues worse and for some, it could mean a trip to the hospital.
  • Social Gatherings – There is a good chance we might not make it to your event or night out. I can assure you that we wish we were there but more often than not, our health makes us flakey friends. Please don’t stop inviting us! We will always try, even if the chances are slim. Also, please don’t get upset with us if we don’t make it. We would rather be out having fun with you than stuck in bed.
  • Know That We Are Fighting A Battle – If we seem a little off, let us be a little off. There are countless times when I was hanging out with someone while my vision blurred and I start seeing stars, getting light headed and heart palpitations but I push through because this is my normal life. Something that has always bothered me was when strangers, coworkers or peers say “Smile! It can’t be that bad!” Well, maybe I am struggling with an ocular migraine that day, low blood pressure or didn’t sleep well, so if I have a case of resting bitch face then let it be. I know it could always be worse but I am here, smile or not!
  • My Illness Does Not Define Me – I am a strong warrior. I love art, music, travel, culture, anything vintage, food, nature, giving back and being creative. I can be sensitive but I persevere and I keep my chin up. I have not given up and I won’t. I have bad days but I climb above it and stay positive, even it it is a full time job. I am not my illness. However, it is part of my life, whether big or small. It may affect me but it is not who I am.

Health

Invisible Illnesses Unveiled – Major Depressive Disorder

This year I have decided to speak up and share my story in hopes that I can break stigmas, knock down walls, inspire others to take their health into their hands by advocacy and research, to help others realize that they are not alone and to grow from all of this.
I finally started seeing a therapist for the first time and was officially diagnosed with severe Major Depressive Disorder. Not mild but SEVERE! I was shocked. However, it is time to acknowledge this and do something about it. It is real and it exists and ignoring it will not make it go away.
Throughout my health journey, I had decided to look into my genes. One of the genes I carry is SLC6A4, a type of monoamine transporter protein that transports seratonin. This provides a lower rate of response to SSRIs (antidepressants). Genetically speaking, this affects individuals when experiencing stressful events in their lives and their cortisol response. Cortisol is a hormone that your body produces to respond to stress. This particular gene is a risk marker for Anxiety, Depression, OCD, PTSD, ¬†Alzheimers and even Autism. ¬†For those who have alcoholism that “runs in their family” actually have association with this gene variant. These are all reason why I feel that EVERYONE should be tested genetically to know what you are predisposed to for preventative measure as well as proper treatments due to certain genes causing resistance to treatments.
Here I am at 33 and finally dealing with something that I saw signs of in my early childhood. Mental health has always been wrapped in shame and stigmas which make it hard for anyone to accept and even wrap their head around. When I felt down and depressed, I did not ever think of it as a chemical imbalance or a disorder. I thought of its as insecurities and a lack of self worth because I truly believed that I was worthless. Now, I have the ability to check myself and remind myself that I am not worthless and that I am having a depressive moment that will pass. I know that this is a never ending effort on my end to continuously work on. I am so sad for the young girl, teenager and young woman that I was. She did not realize that it was a dark cloud blurring her view of the world and that she could take a deep breath and wait for it to pass. Instead, the stigmas and closed doors made her feel alone as she spent her entire life suffering.
Opening up about mental health is incredibly difficult to do. People judge, form their opinions, label you, make assumptions or just completely shut down. For example, I opened up today to a friend about my recent diagnosis and how it was never real to me and what I was feeling with this new acknowledgement and the subject was changed as if I never even spoke of it. When you open up to someone about your health and it gets dismissed you feel like you cannot trust or open up to anyone. However, I knew I could let that go and move on and find the right friend who would understand and listen. Maybe not everyone is cut out for it but I hope to make others aware of this epidemic of depression which takes so many lives. If you are a friend or a person that someone chose to confide in but don’t know how to handle the situation, direct them to someone who can. Dismissing them or ignoring the issues may cause them to feel more isolated.
Mental health disorders are another form of invisible illnesses. When people meet me, I smile and am generally friendly and most people would never guess I battled depression my entire life.
I can’t even fathom to explain how much I can’t stand when a complete stranger says, “Smile! It can’t be that bad!” I like to suggest that if you are that type of person, say something else like, “I hope you have a great day” instead. Those are the little things that make our head sink less.
My advice to anyone in a relationship with someone who struggles with depression is that you have to be patient and when they isolate themselves or push you away, keep a close distance instead so they get their space but don’t feel more alone. We never want to push you away, we self sabotage because in that moment we truly feel like you are better off. My husband always reminds me that it will pass and we even came up with a code word. Communication is so valuable. Always discuss these moments and how you can work through them better next time.
If you are the depressed one in the relationship, you need to be patient as well. They do not understand but they are loving enough to try, so bear with them and listen to them, no matter how stubborn as you can be. You have to do the work. You have to read the self help books and go to therapy and try or their help and support is going to be useless for you. No one can save you besides yourself. This is your battle to fight even if you have people on your side. If you feel like you cannot manage or handle your depression then do not be afraid to seek help. Some people do not know what to do or how to handle a situation, so finding local resources is recommended for more professional help.
There are people who are prisoners to their own mind. I am fortunate to have found a way to cope and get through my depression, but for those who have not can fall into a colossal traumatic, dark hole that may lead them to hurt themselves or others. There is a spectrum for everything, from mild to severe and everyone copes differently but as a community we need to open our eyes whether it is to seek help for yourself or know where to point someone to if they turn to you for help.
Health

What is normal?

Throughout my entire life, I have been living with chronic ailments. I remember being in  grade school screaming in pain from stomach issues. 


I remember when I was 7 years old, running around and my heart felt like it a hummingbird and I would get dizzy. The adults said that it was normal to have your heart rate increase when you run around. My softball coach in 4th grade would tell me to keep going. What they did not know is that my heart was in the 250 beats per minute range. When I was 15, the school nurse finally caught on. Supraventricular Tachycardia. They said I would outgrow it but it got worse and more frequent. It would happen 20 times a day. It was exhausting. But, this was my normal. 


I have always suffered from migraines, chronic pain, depression and fatigue. Every day I had a complaint and after years of being told I was just a hypochondriac, I stopped bitching about it. This was my normal. Normal was insomnia. Normal was waking up at 4am every morning in pain. Normal hurts. I’m normal. Suck it up, Misti! 

I discovered CBD Oil after a recent two month long streak in and out of ambulance rides, ERs and hospital admissions. “Everything is fine”, they said. “This is anxiety”, they laughed. I never felt worse and I thought my life was coming to an end. I went back to the hospitals I had been to, down to the the medical records department and got copies of every single record from the last two months. No, I was not having anxiety attacks. My neutrophils were dangerously low, lymphocytes high, my bun/creatinine was very elevated… to name a few. My 30 day heart rhythm monitor was a scary mess. The nurses and doctor mocked me out the door, dismissing my concerns. “Everything is normal.” Needless to say, my third electrophysiologist is the one. Third one is a charm, I guess. Everything was not normal. My body was giving up on me. I was withering away and living in fear of each day being my last day on Earth. I have three amazing children and the love of my life by my side to fight for. 


*Photo by Arlene Jacobs

After countless hours of research and second and third opinions, I demanded to get my ANA tested, which determines if you have an autoimmune disease. Though, they thought it was excessive and unnecessary, they placed the lab orders anyway. It was positive. 


Had I known this 15 years ago, before 4 cardiac ablations, one open heart surgery, preterm pregnancies, endometrial ablation, hysterectomy consults, years of self medicating with marijuana and wine, chronic episodes of depression, decades of minimal sleep to the point where I had sleep paralysis, endless pain and so on…. I could have gotten the right treatment and care and changed my diet and learned how to manage my health conditions. 



I should not be here. If I listened to my doctors and did not put up a fight, I could be dead. If I did not take aspirin each time I began heart attack symptoms, I may have not made it. I was having vasospasms, spasms of the arteries and vascular system, which was constricting blood flow to my heart and extremities. I was going into circulatory shock from sinus node dysfunction. And to think, they suggested Xanax and sent me out the door!

I have not been back to the ER in a month, since my last hospital admission, which lasted 5 days of no answers. I imagine it is a number of reasons: new heart medications, CBD oil, bedside essential oil diffuser, removing sugar and preservatives from my diet, finding  out my allergies and triggers. CBD is a huge anti-inflammatory and helps with pain, nauseous, spasms, and sleep disorders, which are a few of my medical issues. I sleep so much better! I can keep my heart rate down and blood pressure lowered and stay calm and relaxed. My menstrual cycle is no big deal now. Leg cramps and pain throughout my body is now managed and I am in much better spirits! CBD oil is such an important alternative to the slew of pharmaceutical drugs that have been pushed my way. 

Every day is a new day. I take each day at a time, treat my body right and eat healthy. I still have a lot of pain and now need a pacemaker but at least I am getting answer. I even got genetic testing for Elhers Danlos Syndrome which is also something I pushed during my endless research since I fit the criteria very well. 

Doctors look and me and say I look great. I look healthy. I look fine. 

I cannot stress enough how important it is to be your own advocate and educate yourself. Put up a fight! Take care of your body.