A support network is really important to help you through what can be a difficult and often overwhelming recovery from blood clots or other serious illness. It is important to have a person – or better yet, people – you can rely on to help you process what you are going through, listen to your concerns, discuss your questions and also to help you with any physical needs you may have. Your support network can be formal (like your doctors or nurses) or informal (like your best friend or an online community) and is most often comprised of those people you already have in your life – your closest friends and family and individuals involved directly in your care.
However, when times get tough – especially in the face of an unexpected medical crisis – instead of asking for support, it is really easy to become isolated from family and friends, or even a significant other. Some people don’t want to talk about what they are experiencing because they might feel like it is not anyone else’s business, they might feel embarrassed by what they can or cannot do or they might not know how to talk about something as deeply personal as health. Some people might even feel like their health crisis is exactly that – one crisis after another – and eventually, they may fear they will overburden or even wear out their family members and friends. The truth is, giving or receiving support is not always fair and it’s not always easy. While it is needed, it doesn’t always feel good to have to be on the receiving end of a support system and it can be challenging to be the person providing support too.
Support is something I struggled with during my recovery and the lack of support for people who had survived blood clots was a key reason as to why I started Blood Clot Recovery Network in the first place. From its conception, I knew I wanted this to be, not only a resource, but a support tool for people who were recovering from blood clots. I knew this so much, in fact, that I came up with the name almost immediately – the fundamental word being “Network.” I didn’t want other people to struggle like I did to find support.
Throughout my own recovery, I had support from my husband, Michael, my family, one or two close friends, my doctors and other patient stories that I read online. My early support system was created out of necessity, but has since grown to include a multitude of people and resources. In this post, I want to share with you my tips for developing a support network to help you through your recovery, as I have developed to help me through mine.
This is Michael, my husband.
We have been married for nine years and we have been together for 14 years.
Michael is a wilderness man. He enjoys spending time in nature. As a matter of fact, unlike me, he craves solitude and retreat. He’s quiet, passionate, introverted and intellectual.
Michael was as unprepared for my pulmonary embolism as I was, although he did tell me I needed to go to the emergency room when I had calf pain – and then chest pain – that did not go away. I thought I was suffering from a running injury, and I did not know that anything was seriously wrong. Unlike if one of us had a planned surgery, for example, there was no chance for us, as a couple, to prepare for what we were about to go through – weeks and months of intense physical and emotional care for me.
Upon discharge from the hospital, Michael became my immediate support system out of necessity. I needed his help to move around, get or prepare meals to eat, get dressed and even embarrassing things like bathing or using the restroom. Whether we both liked it or not, he was thrown into a support role that neither of us expected to face at that point in our marriage. We didn’t really talk about it, it just happened and in the long run, I think not talking about it set us up for some trials in the future.
Michael realized It is hard to be a constant caregiver for your spouse or significant other as well as the sole provider, and I realized it is hard to have to rely on your spouse or significant other for every need that you have, even the most basic ones. It’s easy to build resentment, to become frustrated and even to shut down and become isolated from one another. Michael and I experienced all of these things at some point throughout my recovery. In a way, it was a healing process for both of us – not just me – and we had to learn how to function as a couple in the face of serious illness.
So, how do you talk to the people in your life about the support you need or want after your blood clot diagnoses without building barriers? Here are my top tips for finding support, including what worked – and what I wish I had done differently – during my own recovery.
Identify your support network early on and share your struggle.
Being diagnosed with a blood clot can be scary and overwhelming, and you will have a multitude of things to deal with and pay attention to in the beginning. From discharge plans, to medication schedules to INR draws to follow-up visits – the days after diagnosis will be filled with things to do, things to remember and things to find out. Don’t leave designating a support system out of your plan.
As soon as you can, call out and specifically designate your support team by name. Let them know what you are going through and share your struggle with them. Say, “I need support in what I am going through. It is really hard for me to move around so I can’t go to the grocery story right now” or “I need some help with meals for my family for the next few weeks because I can’t stand in the kitchen for very long” or “It’s hard for me to drive a car because of all the medications I am on” or “I’m really scared. I don’t want to go through this alone.”
Tell your network what you need – don’t be shy and don’t feel guilty.
It’s easy to assume that other people know exactly what we need during recovery, but in truth, they may not. As soon as you recognize your needs – don’t be afraid to ask for help from your support network. Let them know what you can and cannot do. Start by saying things like, “I am going to need some support in my recovery. Are you able to help with grocery shopping? Laundry? Or can I call on you when a need a friend?”
This is something I wish I would have handled differently in terms of my own support network. While it was evident that I needed support from my husband and family, I wasn’t very good at asking for what I needed. In part, it was due to not knowing what I needed and when, which is something you might experience as well. In a situation where you know you need support, but don’t know what to ask for, say something like, “I think I might be needing some help. Can I give you a call when something comes up?” You could even make a plan to call or text a friend on a certain day just to check in. Be sure to follow-up on asking for what you need. It is okay to ask for help.
Include doctors and professionals in your support network.
My doctors were an integral part of my support system, especially early on in my recovery. I called my doctor several times a week in the beginning to ask questions, get INR results and to schedule appointments. Find a team of doctors that is supportive of you and your care. If you aren’t receiving support and validation from your healthcare team, address the issue with them or seek secondary opinions.
Keep in mind that doctors tend to stay within their specialty, which is why it is important to have a team of doctors. I call my hematologist for questions about my blood, my rheumatologist for any new symptoms, my endocrinologist for my thyroid and my primary care physician for everyday illnesses or concerns. You can include doctors, nurses, psychologists, nutritionists, personal trainers, financial aid specialists at a medical institution, physical therapists and home health aids in your professional care network – don’t limit yourself in this capacity.
Involve your support network in your care as much as you can. In your mind, assign different “roles” to different people.
It can be stressful – for you and your support – to expect complete support out of just one person. As you build your support team, begin to identify roles or jobs for each person in your head.
For example, identify someone to go to follow-up appointments with you. It is always beneficial to have an extra ear to listen to what can be complicated and overwhelming information. My husband went with me to my first several hematology appointments until I was more comfortable with my care and able to understand the things that were happening.
Sometimes, support is about listening and nothing else. Find that one person who will listen to you no matter what else they are doing – for me it was my father and one close friend. Keep this person’s number on speed dial and utilize it when you need to. I would call these people and just start talking about my day, about my lab results or about my fears. They listened – and gave encouragement too – but I could always count on them to listen. Maybe you have a friend or family member that always looks on the bright side of life? Assign them this role.
My doctor’s nurse handled all questions about my INR, and I could always count on my sister to send me a funny, random text that seemed to take the edge off at just the right time. The online community, by nature, is there 24/7 to help talk through anxiety and uncertainty.
No role is too small when it makes a positive difference for you. Communicate your designated roles to the people you have assigned them to.
Communication is the key to successful support.
Having a support network does not come without its challenges – and who needs another challenge when you are already fighting for your health, right? Setting boundaries was something I wish I would have been more vocal about during my recovery. I think it would have helped me care for myself and helped relieve some of the strain on my husband. Remember, your caretaker might be going through emotions that are not unlike yours – confusion, fear, sadness and guilt. Determine what you both need early on and as uncomfortable situations arise.
For example, once I was able to do normal things again, like work, it was important to me to set a boundary for myself and my husband. Although I felt like I was a productive member of society again, it was still hard for me to process what I was going through. I set a boundary that soon became a routine: I didn’t want to talk to anyone about my day until I was home, changed out of my work clothes and had a few moments of quiet to myself. Unfortunately, I did not communicate this boundary, which resulted in hurt feelings in my marriage.
Communicate what you need or don’t need to be best of your ability with love, care and compassion and allow your support network to communicate their needs to you. Try to remember, it’s not personal, it’s about providing support – for everyone who is involved.
Remember support doesn’t always have to be serious business – have fun together.
Support doesn’t always have to be a chore. Sometimes, it is helpful to have someone to do something fun with to take our minds off what we are going through. Don’t forget to try to have fun during your recovery too. Perhaps you have one friend of family member that you designate as your “fun” support – call that person to watch a move, play a board game, go for a walk or talk for three hours on the phone.
Michael reminded me periodically throughout my recovery that there was more to life than the recovery I was going through, even though it didn’t seem like it to me. He would take me to the park, bring me home wildflowers or stop to get Chinese takeout on the way home from work. My dad took me to a NASCAR race. I didn’t realize it at the time, but little reminders that the regular world still existed helped me immensely during my recovery.
What to do if you don’t have someone (in real life) to share your struggle with.
It is important to seek support from somewhere. You can try family members or friends; your doctors or medical team; your church or place of worship; support groups at local hospitals or clinics; a therapist, social worker or counselor; national caregiver organizations; or non-profit organizations specific to your situation.
Seek Support Online
Today, most individuals have an electronic device with access to the Internet. Get involved with support groups online and get involved early on in your diagnosis. Implement some of the strategies above when making connections online.
My top blood clot support groups (on Facebook) are:
- Blood Clot Recovery Network Closed Group
- Surviving A Silent Killer Closed Group
- Pulmonary Embolism Awareness Project (PEAP) Closed Group
- Even more Facebook Communities
My top blood clot support groups (outside of Facebook) are:
Finally, always remember to say thank you to your support team – no matter how big or small their role is. Practicing gratitude is difficult – especially in the face of serious illness and we feel like we have nothing to be grateful for – when the truth is, we do, if we just look around us. And, it’s never too late to go back to the people who were or are there to support you and say, “Thank you for being there for me.”
There is hope for healing and you are not alone,
Who should be involved in your medical care? To learn more about specialists, visit here.
To be a part of the private Facebook community, go here, and ask to join the group. Chat with you there.