I’m frequently asked, “does the anxiety after blood clots ever go away?” My answer is, “usually it gets better, but it takes time – sometimes it takes a long time.” Health-related anxiety after a blood clot is something that many people experience, and it is something that I have dealt with – and still deal with – six years after a DVT and PE changed my life forever. While I still face anxiety from time to time, it does not completely rule my life. That is what I hope for you too, and that is what I mean when I say, “it does get better in time.”
A blood clot in my lung is one of the scariest things I have ever experienced. If you’re feeling that too, you’re not alone. The anxiety I felt after my blood clot was debilitating, and healing from it was just as hard as – if not harder than – healing from the physical problems I faced. For me, the anxiety would start with a small ripple, just the smallest thought thrown into the pool of my mind, like a stone: What if that tight muscle isn’t just a tight muscle? The stone would sink, and the ripples would spread out: What if it’s a blood clot? I think it hurts to put pressure on my leg. Farther and farther: I’m not sure if I can breathe. I must have a blood clot. I can’t go through this pain again. I won’t survive this one. My thoughts would escalate until there was nothing else on my mind, except what might be wrong with me.
No one doubted that I believed I had a reason to be afraid, but no one in my personal life really understood what I was going through. On the outside, I looked fine. My initial days, weeks and months after my blood clot were filled with frantic phone calls to my doctor – and his nursing staff – to ask about a current pain, feeling, sign or symptom of something that was, without doubt, going to be the end of me. My doctor was supportive and listened to my concerns. He told me I was normal for being worried. He usually instructed me in one of three ways: Watch something for a progression of symptoms and call back, make an appointment to come see him as soon as possible, or head to the ER to get checked out. I have done them all. Through this (repeated) process, I have since learned what I can watch myself, when I need to make a phone call, or when I need to go to the hospital.
It has been six years since my blood clots, and I don’t focus on the fear from day to day anymore. It took me a long time to heal, though, and it wasn’t always easy. While I was recovering, I spent months and months wondering if my health would improve, or if something else would happen that would leave me with more problems, or worse yet, dead. Living with antiphospholipid syndrome – or APS, which is the autoimmune clotting disorder responsible for blood clots – makes it hard for me to go back to the way I was. APS could progress, or create more serious problems, such as problems with my organs or stroke, so I can’t ignore changes in my health. Taking warfarin – an anticoagulant to prevent future blood clots – has changed my life in several significant ways. I get my blood tested regularly, and I take some extra precautions – like calling my doctor – if I hurt myself or notice anything unusual, such as bleeding or bruising when or where I shouldn’t be bleeding or bruising.
Even though my daily life is not consumed by “what ifs” with regard to my health, there are times when it still gets to me, and there are times when my anxiety still takes over. I have always been an anxious person, especially about my health, but my blood clot experience – and my APS diagnosis – has added another layer to my anxiety. When I was a child, I always thought I would have the “worst-case scenario” disease or injury, when in reality, I was a pretty healthy child (except for an underactive thyroid). When the worst-case scenario did happen to me – a life-threatening blood clot at just 29 years old and diagnosis of a disease that no one had ever heard of (or that no one could pronounce) – it seemed that all of my childhood fears had come true.
Sometimes these deeply embedded fears, combined with what I went through with my blood clots, get the best of me. Last Monday, I woke up with a pain in my stomach that felt a little bit like bloating, but it wouldn’t go away. It lasted two days, during which time I convinced myself it was massive internal bleeding. So, I had my INR checked and found out it was within my normal range. Given that I had no other symptoms besides pain, I made an appointment with my primary care physician who ran some tests and concluded that it was one of two things: indigestion or the start of my menstrual cycle. The latter proved to be true – within hours of leaving my doctor’s office – and I felt relief from my stomach pain. I relaxed, confident that I had talked to my doctor and everything pointed to my period.
The next day, I had a strange sensation in my head and some weird anomalies in my vision, which worried me. Vision changes can be a concern for people on certain medications and for people with APS. I believe I experienced on ocular migraine, which the Internet said (thank you, Internet) could be a result of disrupted blood flow in the brain. I panicked – and ran with blurred vision – to tell my husband. In my heightened state of fear, I managed to trip and fall halfway down the staircase, twisting my ankle and banging my back on the bottom step. Now, I knew I was bleeding internally and would need ankle surgery too.
I wasn’t bleeding – thankfully – and my ankle pain resolved after ice and rest. I decided to live out the week – and maybe the rest of the year – in a bubble. In all seriousness, though, I am concerned about what happened with my vision, and wondering about it sent my anxiety into overdrive. An appointment with my eye doctor didn’t reveal any immediate problems, but we’re keeping an eye on my symptoms.
I know, though, that I will be okay. What I have learned since my blood clots is that healing is a process – and it is something that I constantly work to obtain. My healing wasn’t linear, it didn’t happen overnight. I didn’t heal in all aspects of my life all at once. My journey to healing was filled with twists and turns, ups and downs, and bumps in the road. At times, I would take three steps forward and eight steps back to a place where I had just come from. It took me years to repair my physical health, my financial health, my self-esteem, and my relationships. I am still working on healing my emotional health.
Over the years – and since I have gained some distance from the time when my blood clot happened – I have learned a few simple things that have helped me deal with anxiety after blood clots. Ignoring it was not helpful. Wishing it would go away – and not doing anything about it – was not helpful. Telling myself to suck it up – and get over it – was not helpful.
Here is how to handle your health-related anxiety after a blood clot:
Trust yourself – and be kind to yourself.
If you think something is wrong – or different – you’re probably right. Give yourself some credit after everything you have been through. If you have a question or a concern – whether physical or emotional – allow yourself to feel that. Your body has a way of telling you when something is wrong. Honor that relationship and get it checked out.
Talk to your doctor.
Your doctor should be your number one go-to when you have a concern about your health. No matter how small – or big – you think your concern is, communicate with your healthcare team. Sometimes, even the smallest symptom or problem might be a sign of something serious. Or, it may turn out to be something insignificant, but at least you know. You have to nurture your physical and emotional health. There is no sense in worrying about something, if you can get it checked out instead. Take your trust in your body’s signals and contact a medical professional to help you figure out what may – or may not – be going on. Both outcomes are okay!
Keep a journal or log of your symptoms.
I love journaling a lot of different aspects of my life – work tasks, travels, stories, blog posts, recipes – so this comes easy to me. If journaling doesn’t come easy for you, that’s okay. Start by getting a notebook – or the notepad on your phone – and just make a list of what is happening to you. If you have a question or a concern, write it down. Write the date, what occurred, how long it lasted, how you felt, and what you did about it. This is helpful because when your doctor asks if anything is new, you have it all right there in front of you. If you make an appointment to see your doctor for an issue, your doctor will ask for details. Be prepared ahead of time and pull out your notes.
Seek help for the emotional aspect of recovery.
Sometimes, we can’t do it all alone, even if we try. Often times, people wouldn’t find it unusual to contact a physical therapist for help with movement and motion after surgery, for example, but they are afraid to contact a counselor or psychologist for help with emotional healing. Do not be afraid. Just like our bodies, our minds may need help to heal. You would never expect to heal physically from a blood clot without medical intervention from a doctor. Equally, if you are struggling on your own, you should not expect to heal emotionally without assistance from a professional. If you need help, talk to your doctor. He or she can direct you to these services.
Have patience with the process.
I was not patient during my recovery from blood clots. Looking back, though, I can see that time was perhaps the most critical factor in my recovery. It took time to heal physically – and it is taking time to heal emotionally. There was nothing I could have done to speed it along. Blood clots are life-changing and traumatic for many people. Trauma is not healed in a day, a week, or even a month or two. It can take a very long time to heal. It is so hard to be patient when you want to desperately to feel better, but sometimes, time is what it takes to get to where you want to be. Your body – and your mind – have been through a lot. Allow them to take the time they need to heal.
Don’t forget, it’s important to talk to people who understand what you are going through – because they have been there too. Join my private Facebook Group for more peer support.
There is hope for healing, and you are not alone.
Reader Writes In: Do you struggle with health-related anxiety? If so, what are your thoughts for dealing with it? Share in the comments. I would love to hear from you, and your comments are so helpful to the other people who read this blog.
Get my resources for emotional healing from blood clots here.
You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.