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Enduring extreme, chronic illness is never fun, especially when there are no answers. So, finally receiving a diagnosis can be somewhat relieving in certain instances. However, most of the time, it is extremely shocking and upsetting.
I still remember like it was yesterday. I was working out, when I missed a phone call from my doctor. He said that this was urgent and I needed to call him back immediately. My stomach dropped and my mind was racing. They said they found something in my blood. I started crying and called my mom.
She said that she had already talked to my doctor, there was some news but everything was going to be okay – my life was just going to change a little bit.
That is when I found out about CVID. I was given so much information at once, and I just had so many questions.
Where does this come from? Do the treatments hurt? Will I live a long life? Am I ever going to be able to have kids? Can I go back to school?
My mind started racing. And it felt like it didn’t stop racing for years.
I felt so alone. I didn’t know a single person with this disease. It was so isolating. How do I tell my friends? How do I tell future managers and bosses?
When I discovered that I had this disease, I was very shattered. I already had a flight to Denver to go see a concert with my friends, and I knew I had to pull myself together so I could have fun. I was immediately depressed and sent into a dark mental space.
I was always a friend that loved fun. I am pretty extroverted and social. But, I felt like this temporarily altered my personality and who I was. I kept asking myself – why me? What did I do to deserve this?
After losing yourself, it takes a while to find who you are and be okay with your circumstances.
I was grateful to start treatments, and luckily I started to feel better very quickly. I was so happy to get some answers and start getting my life back.
But, with many chronic illnesses come complications. It feels like the fight is never really over.
I was soon faced with the scary talk of possible leukemia, lymphoma, and other diseases. The first time I heard that I needed biopsies for these diseases, I broke down. I spent so long wondering what would happen to me and if I was going to have to quit school.
Anxiety & Depression
The anxiety and depression alongside chronic illnesses is often overlooked. Mental health in the rare disease community is so important . Talking about my feelings and going to therapy has helped me so much.
I also have loved journaling, which helps me get my feelings out on paper when they feel so trapped in my mind.
I’m grateful to be surrounded by so many amazing people. When we lose our health, we need to find support in those around us. Oftentimes, people say that they are their own worst enemy. Unfortunately, that has been a way of life for me. But, I am slowly working towards making my brain a beautiful and healthy place. I weirdly find comfort in the unexpectedness of life – knowing that anything can change at any moment.
Your Feelings Are Valid
If you just received a diagnosis, it’s okay to feel down and sad and not like yourself. Don’t let anyone make you feel bad about your emotions.
Your feelings are valid. Anxiety and depression are very real mental health conditions, and there are all kinds of treatments out there.
How to Improve Your Mental Health Post-Diagnosis
Here are some health care practices that I like to do:
This is a drug-free supplement that I first heard about on Tik Tok, and many creators were saying that it helped with their anxiety, so I started to take it every day. I definitely feel like it works, but everyone is different. It’s a great remedy for if you aren’t currently prescribed anxiety medication.
In college, I was prescribed medication, but I absolutely hated taking it, so this was a good alternative. You can buy it on Amazon here.
It sounds silly, but I love doing fun self-care things like a good face mask! Even if they don’t seem to do a lot, I just love the feeling of skincare and I get a sense of relaxation. Plus, it’s a super cheap way to start feeling better. Try it out.
Revamp Your Beauty Regimen!
When I change up my beauty routine, I always start to feel better. The decline of my mental health caused me to take less care of myself, and it ended up making me really sad. I wanted to feel comfortable and confident. Do whatever makes you feel great!!
- My favorite tanning drops are Isle of Paradise – literally amazing! Just add it to your daily moisturizer and there you have it! Apply smoothly, and you will have a nice, natural-looking tan. I like to put it on my face! I just have to be mindful that I am applying smoothly on all areas I want to be tanner. Try it out – here.
- I love using eyelash growth serums, one of my favorite is Grande Lash. My lashes have gotten really long, and it’s super fun because I love eye makeup. If you wanna grow your lashes it’s a great option!
- Alongside that, I loooooove Telescopic Mascara it’s AMAZING! It makes my lashes literally look so long and pretty. Check it out! – It’s by L’Oreal.
- One time I went and got a facial and discovered that I had broken my skin barrier. I was recommended this Dermalogica face lotion and it changed my skin! It’s a little pricey so I don’t buy it all the time but this is what I really like. I have pretty dry skin.
Make Your Room a Sanctuary
When dealing with hard mental health days, I love that my room is a place where I can relax, decompress, and enjoy things that I love. It’s nice to feel like you have a hideaway when the world is too much. I love to just lay in my bed and watch TV with my candles on and my diffuser going.
I definitely recommend getting an essential oils diffuser – I loooove essential oils. There are so many different ones for sleep, anxiety, pain-relieving, and more! When researching, I found this from an article:
Candles are literally my favorite thing ever. They make my room so cozy and smell so good. I buy them all over. Bath and Body Works, TJ Maxx, Target, and Amazon. When it is Christmas time, I love the smell of Basalm candles.
Receiving a difficult diagnosis is SO hard
Overall, it can be so shocking and upsetting to have a diagnosis. And the pain, sadness, and shock can last a very long time. It’s easy to wrestle with the questions and ask “why me?” I still do it sometimes. As a 23 year old, I feel like I am in a war against my body sometimes.
Depression and anxiety post-diagnosis is totally normal and you are not alone. Finding community and doing the things you love will help you on the journey. And it’s not always linear, there will be ups and downs.
Mental health is SO important, and if you are struggling, just know that people love you and care about you.
You will get through this, you are strong!
I have learned a lot about mental health through personal research and having some really good conversations with people around me. There is so much information out there, and it can be pretty overwhelming. I have inserted some articles that I have found useful.
- Chronic Illness and Depression – Cleveland Clinic
- Chronic illness and Depression: What is the link? – Medical News Today
- Anxiety and panic attacks – Mind
- 11 tips for coping with an anxiety disorder – Mayo Clinic
Never feel ashamed about your mental health!
I have felt a lot of pressure to make it look like I’m doing amazing all the time, especially when I was in college. The outside of my life can sometimes not be accurate to what is actually occurring in my mind and body. I felt like I hid my chronic illness from some people for a while because I felt weird or as if I was a downer on people’s lives.
But, I don’t want to be ashamed anymore. I am who I am, and my feelings are valid. Having this disease is hard. And it’s okay to feel down about it. But it’s also really important for me to figure out what makes me happy and what is going to help me move forward in a healthy way so that. I don’t hate myself or my body.
Your feelings are valid and you got this!! Life can be hard – and it’s normal to feel this way after hearing some bad news. Give yourself grace!