After I was first diagnosed with a blood clot in 2012, I was scared, lonely and ultimately terrified of what would happen to me. Doctors and specialists were telling me repeatedly that I was “lucky to be alive,” but I was in so much pain and distress I felt far from lucky. I was grief-stricken with loss and heartache and felt nothing like myself anymore. Truth be told, I went through a long period of thinking I would rather not live to see another day if it meant the pain would end. The physical pain from my pulmonary embolism (PE or blood clot in the lung) and deep vein thrombosis (DVT or blood clot in my leg) was the worst I have ever experienced in my life. The physical recovery period was the longest I have ever faced in my life. If you don’t know what recovery from a pulmonary embolism looks like, read this post to find out more about it from my perspective.
In those early days, I searched the internet for more information about recovery – and disappointingly found very little, which is one of the reasons I decided to start this blog – to help other people like me. Today, there is much more information on the internet, but still, I feel al great deal of resources are lacking, particularly when it comes to emotional and psychological recovery. Emotionally, surviving a PE was devastating for me and I still struggle with anxiety, depression, fear and guilt to this day, nearly four years later. So, what does recovery from a PE feel like? Let’s talk about it.
Recovery from a pulmonary embolism feels overwhelming. I don’t know where to start with the overwhelming part of recovery because it is so – overwhelming. For me, it started with a complete change in how I cared for myself and monitored my health. I was diagnosed with antiphospholupid syndrome – a disease I had never heard of, let alone understood – and with that came a new routine of INR blood draws, weekly doctor’s appointments, new specialists and regular exams. I had to mange a constantly changing medication schedule between myself, the doctor and the pharmacy. All of these physical things transformed into an emotional upheaval that I was not prepared to deal with in addition to being physically ill. I had no idea what was happening or what was going to happen. In just a few days, I felt like I lost complete control of myself, my thoughts and my life and there was no conceivable way to regain control. In fact, there would not be for the immediate months ahead.
Recovery from a pulmonary embolism feels frightening. I have never been more terrified than when I experienced my DVT and PE. Simply put: It’s scary to hear you should have died or that you almost died or that it’s a wonder you are still alive. It’s just as frightening to hear there is no immediate resolution to your situation other to wait and see what happens.
Recovery from a pulmonary embolism feels lonely. I was immediately isolated after my pulmonary embolism if for no other reason than no one I knew had ever experienced a PE themselves. I had no one to talk to about my pain or feelings. I had no one to tell me it would get better, or worse, or anything. I had no one to tell me what I was experiencing was normal or abnormal. I was just alone. The more alone I felt, the farther into isolation I sank, until I didn’t even want to see my family or friends. If no one could understand what I was going through, which is how I felt, it was better to be alone rather than spend the energy trying to explain a complicated recovery just to have the person say, “That sucks, when will you get better?”
Recovery from a pulmonary embolism feels anxious. I have always been an anxious person, but my anxiety skyrocketed after my PE – I felt like I was in a constant state of distress. My worry seemed limitless: Was I having another PE? Would I have another PE? Would I survive another PE? Would my husband or dad or sister or friend have a PE? Was that pain in my leg a new blood clot? Was the pain in my head a blood clot? Was the bump on my arm a blood clot? Was there a blood clot somewhere in my body I didn’t know about? What if my leg stopped working? What if I stopped breathing overnight? What if I never drove again? Ran again? Worked again? Cooked again? Walked up the stairs again? The scenarios replayed in my mind constantly and sent me into a continual state of panic (read this post for more about panic attacks post-PE).
Recovery from a pulmonary embolism feels like grief. The discovery of a life-threatening illness or disabling condition and/or bodily injury are commonly overlooked causes of emotional and psychological trauma (source) and yet, they are legitimate sources of trauma. Surviving a blood clot – remember a DVT can cause a PE which is life-threatening – is a traumatic event. It is normal to go through a grieving process following trauma because you have experienced loss, no matter how temporary and regardless of if you ever gain those losses back. I felt like my whole world and identity was lost – I lost my ability to run, my job, relationships, security and trust in my body, to name a few things. This loss was devastating emotionally, not unlike experiencing the loss of a loved one.
Psychological and emotional reactions to trauma can include, but are not limited to feeling: sad, hopeless, numb, disoriented, withdrawal, confusion, anxiety, fear, anger, confusion, irritability, mood swings, disbelief, shock, guilt, self-blame, survivor’s guilt, paralyzing fear, trouble relating to others and/or difficulty concentrating (source). You are normal if you feel these things.
A lot of bad feelings, right? Absolutely – overwhelming, frightening, anxious and incredibly sad feelings. The better news is, there are some things you can do right now to help cope with these feelings. In time, I have found the feelings get better. I no longer experience extreme fear, loss or isolation. And while I’m still working on some things, I am hopeful that I will continue healing.
- Talk to your doctor and ask questions. Do not be afraid to ask your medical team for assistance, answers, a medication or a referral to speak to someone about what you are experiencing or feeling. Some things you can do now: read about DVT and PE; make a treatment plan with your physician; take your treatment plan one step at a time; read about other people’s experiences with DVT and PE.
- Don’t isolate yourself. Find someone who understands, which is not easy. Some things you can do now: Utilize BCRN discussion groups; join online discussion communities; find a local support or social group; help someone else understand their feelings through sharing your own experiences.
- Accept the process. For me, anxiety is lessened by the fact that know I know the signs, symptoms and risk factors for DVT and PE. If it happens again, maybe I will be better prepared the next time. Some things you can do now: Familiarize yourself with your risk factors and talk to your doctor about ways to reduce that risk; allow yourself to feel anxious; find an activity that helps you feel calm (I like to listen to music or write); be patient with your feelings.
- Take care of yourself. You survived, remember? Your body and emotions need some tender loving care to get through the recovery period. Some things you can do now: Allow yourself ample time to rest; break large tasks into small, manageable ones and congratulate yourself as you achieve them; consider seeking professional guidance (that’s okay) to talk about what you are feeling; take steps to reduce stress, eat a well-balanced diet; keep moving, even if it is from your seat; engage in your follow-up care; do something you enjoy.
- Treat yourself kindly. It’s not a race to get better – and your body and emotions may need more time to recover than you want them to. Some things you can do now: Be aware of the way you talk to yourself; allow yourself to acknowledge what you are feeling – it is okay to feel this way.
Reader Writes In: What does recovery from a blood clot feel like for you? How do you manage or address your feelings?
There is hope for healing and you are not alone,