Support for people with chronic conditions
As we watch the COVID-19 Delta variant rapidly spreading throughout our country and the world, fears of getting sick and losing one’s health, or life for that matter, are heavy on many people’s minds. However, there is a large population of people that have lived with this fear long before COVID-19 was a thing. Those suffering from chronic pain or illness, or those with weighty diagnoses hanging over their heads, live day in and day out with fear related to what the future may hold. Will they be able to stand at the sidelines of their child’s soccer game, walk into the auditorium for that high school graduation, dance with their children on their wedding days, hold their first grandchild? Questions like these often plague their minds on even the sunniest of days.
Unfortunately, some people with chronic illness struggle daily. Pain is a constant companion for these individuals, and this physical pain bleeds into their emotional and spiritual health. The people around them may create distance from them, causing further isolation. Other people with chronic conditions actually may have ‘good days.’ This can be a blessing and a curse because it makes it difficult for them, and the people around them, to know what the next day…or even later that same day…may be like. How can you make plans when you have no idea how you will feel? These people may feel misunderstood and invalidated by those around them who become frustrated with the ups and downs, or even think they are exaggerating or faking altogether.
I would like to take this opportunity to outline some things people with pain or illness can do to help during their darkest moments, as well as what loved ones can do to offer support. This is certainly not a comprehensive list, and since we are all different, there will be some individual preferences and levels of comfort to be considered. However, it is a starting point where conversation can begin.
Receiving a diagnosis may be an explanation for the pain and suffering endured for months or years. In some ways, this can be a relief and serve as validation that you aren’t really “crazy” or attention seeking. However, that diagnosis and prognosis may also come at a time where there are zero symptoms and you’re living your best life. The news can leave you spinning as you cope with the physical, emotional, and financial stress that follows.
So what do you need in those moments?
1. Take some time to absorb the news and catch your breath. You don’t have to respond to pressure from doctors or family. Rather, you can set the pace.
2. Allow yourself to experience your emotions as they come. There will likely be a flood of emotions…sadness, fear, anger, resentment, jealousy, grief. Whatever you are feeling is normal, and it is ok. Feelings are like the waves in the ocean, they will surface, peak, and dissipate on their own. Sometimes all we can do is ride the wave. When the emotions surface, give them a seat at the table for a bit; however, don’t let them buy property within you. You can experience the emotions, give them a voice, and allow them to pass.
3. Focus on the present. Don’t expend energy on all the things you could have or should have done to possibly prevent this diagnosis. The past cant be changed. Likewise, don’t focus on predicting the future. Don’t spend time envisioning yourself in the wheelchair or limited by what statistical survival rates are. You are an individual, and even though your diagnosis may be something your doctor sees frequently, your path is still unique. It is of vital importance to remain in the present. When you are pushing your child on the swing at the park, allow yourself to feel the wind on your cheeks, soak in his squeals, feel the moment. The past cant be changed, and the future is unknown, regardless of what the internet may say about your prognosis. If you spend the time you have living in the past or the future, you are missing these precious present moments. Mindfulness apps and grounding exercises can help.
4. Find a purpose. Invest in those relationships, join a book club or start a backyard garden, sign on for that project at work, volunteer with the local animal rescue, join a Church group….whatever you need to do to be active, distract your mind, and show yourself that you (and your life) are so much more than your diagnosis.
5. Do what you need to do for yourself, even if it doesn’t make sense to anyone else. If you need to stay in your pajamas and watch The Office all day, do it. If you need to cry while you eat a bowl of ice cream, do it. If you need to research alternative therapies or treatment options, do it. If you need to talk to a spiritual leader, do it. This is your life, and you don’t have to defend your thoughts, feelings, or behaviors to those around you.
6. Open up about your feelings and experience. If you don’t feel comfortable talking to family or friends, consider joining a virtual or in person support group or speaking with a counselor. Being diagnosed with a chronic condition or given a poor prognosis can be traumatizing. You do not have to bear the weight on your own.
If you are a loved one of someone who has received a devastating diagnosis or is struggling to cope with debilitating symptoms, you may feel helpless. You cant take the diagnosis or pain away, but you can be a support.
1. Receiving a weighted diagnosis can feel isolating, and often times people close to the person will distance themselves due to their own discomfort and awkwardness. You don’t have to say and do all the ‘right things’ in order to be a support. What matters is that you are there.
2. Offer to help, but be specific. Being vulnerable and asking for help is hard. It is much easier to accept support when it is specific and detailed. Instead of saying, “let me know if you need anything” try something like “I would like to help babysit for you this week, how does Monday afternoon sound?” or “I am planning to make a meal for you this week. Would Tuesday or Wednesday work?” or “Can I come over to do a few loads of laundry for you?”
3. It can also be a huge relief to have assistance with errands. “I would like to pick up the kids from school for you, would that be ok?” Or “I am going to the grocery store today, and I would like to pick up a few things for you.” Offering your support in this way makes it less uncomfortable for the person to have to ask or try to juggle everything solely.
4. Keep inviting the person to do activities or spend time together…even if the answer is no. Coping with a diagnosis or prognosis can be devastating and have extreme highs and lows. They may turn down multiple invites, but there may be one time when they are able to attend. If the invites stop, it can feel incredibly isolating and lonely. Remind yourself that a no is often due to physical or emotional pain, and it is not personal. Be that consistent source of support during a very inconsistent chapter in their life.
5. When you do plan an outing, ask them what they would like to do or where they would like to eat. They may have physical limitations or dietary restraints that make activities challenging. Giving them the option to choose may be less awkward than having to say no to a specific event, and it can provide them with a feeling of control when things likely feel very out of control.
6. Offer to attend a doctor’s appointment. When coping with a serious diagnosis or condition, it can be overwhelming. Prior to the appointment, ask if you can help to write down any questions or concerns that need to be addressed. It is easy to forget things or miss the specialist’s response because of the emotional nature of the situation and thinking of 20 follow up questions. Having a trusted support person present can be invaluable. As the support person, you can take notes on the information provided and help to recap the appointment later.
7. Researching and advocacy are essential when coping with a diagnosis. However, research can be a slippery slope that leads down a rabbit hole to depression and anxiety. As a support person, you can ask, “can I help you do some research on your options?” This can be immensely beneficial in that it allows you to be a rational sounding board and someone who can reel the person back in when the emotions take control.
8. Allow the person to feel whatever they are feeling. Resist the urge to say things like, “you should be grateful…” or “you shouldn’t feel that way…” Focus on validating their experience, and avoid saying you understand when you have not walked in their shoes.
9. Be a presence. Be willing to spend a day on the couch watching movies if that is what they are able to do that day. Bring old pictures of happy memories to reflect back on. Come over armed with funny movies and a bag of sour gummy worms if that is their favorite treat. Be a listening ear, but also be a source of fun and laughter. Your presence can be the light in deep darkness, so don’t underestimate the power you have.
This is not a comprehensive list, but it is a starting point. Be open and honest with each other. Part of this communication means being able to listen without judgment to things that may be difficult. Life is hard, and chronic pain and illness make it harder. It’s not about being perfect, rather it is simply about waking up every day and doing the best you can that day. If you are living with physical pain or fear related to what a diagnosis received may bring you in the future, and you find yourself in need of professional support, the clinicians at Chrysalis Center are here for you. You don’t have to travel this road alone.