Relationships and Loved Ones | Coping with life-altering events and chronic illness support.

I don’t want to be bitter and mean to other people, but sometimes it’s really hard not to react to their comments, actions, or emotions. This life-changing event has taken its toll on my marriage and friendships, and I wish I had been in a place to realize earlier the impact this has had on those around me and what I could do about it.

It can be so difficult to deal with other people. Whether they are in the storm with you or on the outside.

In this blog is a space for reflection and a sharable guide and sample letter you can use to reach out to the other people in your life to help them better understand your world and your needs 

 I worry sometimes when I use my handicap placard someone will say “you don’t look disabled to me” and I think if they did, I would say “and you don’t look stupid to me, but here we are.” It makes me feel better when I imagine really saying that — probably not a good thing, but some days it helps me laugh through the frustration.

Realizing the impact on “other people” is not about taking on more responsibility; it’s about making space for everyone’s feelings and reactions while still honoring your limits and your worth. Your loved ones can support you, but they cannot carry every part of this for you. Healing asks for honesty, compassion and shared understanding, not perfection.

Unless you live with someone with Chronic Illness who is experiencing a life altering event, I don’t think you can fully understand what the entire family is going through. 

The ones closest to the storm

Other people often live inside the storm with you, even if they don’t share your diagnosis. Spouses, children, parents, and friends are forced to adjust too.  Your families taking on more responsibilities and having a lot more emotional and physical things to deal with—sometimes becoming caregivers, sometimes grieving the version of you and of life they thought they would have. They also don’t know how you are going to feel from day to day or hour to hour, how you are going to feel or how you’re going to change. Some medications can make you anxious or aggressive.  They may experience love, fear, frustration, and helplessness, and they don’t always have the words to express it.  This can leave you feeling guilty for needing care, angry at being misunderstood and deeply alone in a body and a life you didn’t choose, even while surrounded by people. This does not mean that your relationship is broken beyond repair, you are all just learning how to navigate this new life together.

Here are gentle, practical phrases you can say to your loved ones—the ones closest to the storm—to help them feel seen, ease their helplessness, and build that new bridge together. These keep your energy low while opening space for mutual understanding:

Phrases to acknowledge their grief:

• “I see how hard this is for you too—the life we pictured feels so different now.”

• “I know you’re grieving parts of me and us. Thank you for staying even when it’s messy.”

• “Your fear for me makes sense. I’m scared too sometimes.”

Phrases to guide and without pressure

• “Right now, what helps most is you just being here—no solutions needed.”

• “I don’t need you to understand all my pain. Just hear me without trying to solve it.”

• “When frustration comes up for you, can you tell me? I want to hold space for that too.”

Phrases to show appreciation

• “You’re not failing me. Loving me through this storm is the brave part.”

• “Thank you for adapting with me. Small moments like this mean everything.”

• “Let’s name one tiny thing we’re still holding onto together today.”

Use these when you have the words, or even silently in your heart. They remind everyone that connection grows through honesty, not perfection.

Relationship reflection space

1. Since this happened, the biggest change I’ve noticed in my relationship with my spouse/partner is…

__________________________________________________________________________________

and this makes me feel…

__________________________________________________________________________________

2. One way this has affected my children, parents, or other close family members is…

__________________________________________________________________________________

What I wish I could tell them about this is…

__________________________________________________________________________________

3. Something my spouse or family does that helps me feel supported is…

_________________________________________________________________________________I want to remember that this matters to me because…

__________________________________________________________________________________

4. Something my spouse or family does (or doesn’t do) that hurts or adds stress is…

__________________________________________________________________________________If I felt safe enough, I would like to ask for…

__________________________________________________________________________________

5. A fear I carry about being a burden to the people I love is…

__________________________________________________________________________________If I spoke to that fear with compassion, I might say…

__________________________________________________________________________________

6. One boundary I need with my spouse or family to protect my energy or dignity is…

__________________________________________________________________________________Holding this boundary might look like…

__________________________________________________________________________________

7. I can see that my spouse/family is also grieving in these ways…

__________________________________________________________________________________One small act of kindness I could offer them, without abandoning myself, is…

__________________________________________________________________________________

8. If we could have one honest, gentle conversation about how this has changed our family, I would want to say…

__________________________________________________________________________________and I would hope they might say…

__________________________________________________________________________________

People further from the storm-acquaintances, casual friends, coworkers, neighbors, extended family and even strangers -often respond to invisible illness from their own fear and discomfort, not from what’s actually true about you. Unless you live with someone with Chronic Illness who is experiencing a life altering event, they don’t fully understand what the entire family is going through. When they can’t see your pain or fatigue, they may decide you’re exaggerating, “lazy,” or not trying hard enough. Some will offer cures and quick fixes instead of listening, because it’s easier to believe there is a solution than to sit with the reality that you’re suffering. These reactions can make you doubt yourself, feel pressured to perform wellness, or push your body beyond its limits just to prove you’re “really” sick. Naming this is not about blaming them, but about letting go of their unsolicited advice and stories so you can honor your body and your truth.

I give myself permission to stop explaining or defending my illness because:

• My pain and limits are real whether or not other people understand or approve.

• Constantly defending myself drains energy I need for healing and daily life.

• People who truly care about me will believe me without requiring proof.

• My worth is not measured by how “productive” or “normal” I look on the outside.

• I am allowed to protect my body from harm, even when others don’t agree with my choices.

• I do not owe everyone access to my medical details, symptoms, or private struggles.

• It is kinder to myself to listen to my body than to argue with people who have already decided what they want to believe.

• My job is to care for myself in the life I didn’t choose, not to convince others that my storm is real.

Releasing reflection space

1. A time someone didn’t believe my illness, loss, trauma (or minimized it) was

__________________________________________________________________________________

The words or actions that hurt most were

__________________________________________________________________________________

and I started to tell myself…___________________________________________________________________

2. Someone has implied I’m lazy, not trying hard enough, or ‘giving up’ by saying…

__________________________________________________________________________________If I could answer honestly and safely, I would say…

__________________________________________________________________________________

3. People have offered cures, diets, or miracle solutions like…

__________________________________________________________________________________Deep down, what I wish they would offer me instead is…

__________________________________________________________________________________

4. When others don’t understand my limits, I often respond by… (pushing myself, shutting down, over-explaining, people-pleasing).

__________________________________________________________________________________This affects my body and heart by…

__________________________________________________________________________________

5. One judgment or label someone has put on me because of this is…

__________________________________________________________________________________My truth about myself, that I want to hold onto instead, is…

__________________________________________________________________________________

6. A story I’m tired of trying to prove wrong (for example: ‘I’m not lazy,’ ‘I’m not faking’) is…

__________________________________________________________________________________What would change for me if I stopped trying to convince them?

__________________________________________________________________________________

7. Right now, I give myself permission to stop explaining or defending myself to…

__________________________________________________________________________________because…

__________________________________________________________________________________

8. If I surrounded myself only with people who believed me and respected my limits, my life would feel more like… __________________________________________________________________________________and I might treat myself differently by…

__________________________________________________________________________________

Helping Other People Understand

This section has a sharable guide and sample letter you can use to reach out to the other people in your life to help them better understand your world and your needs. Use it in any way that feels right to you. Not all people may be receptive to this information and that’s okay.

A Support Guide 

If someone you care for is living with chronic illness or another life-altering event, the most helpful thing you can offer is not a fix. It is understanding. It is patience. It is the willingness to believe their pain even when you cannot see it. What you may not see is the exhaustion behind the scenes, the grief, the fear, the side effects, the mental load, or the effort it takes to keep going when life changes without warning.

People often think a life-altering event should be something you can simply adapt to right away. In reality, it can mean constant exhaustion, unpredictable emotions, changing routines, and the work of trying to live in a life you did not choose. It can be physical, mental, and emotional all at once.

Some days may be spent recovering, adjusting, grieving, or trying to stabilize after a setback. Other days may be spent carefully protecting limited energy just to get through ordinary tasks. None of that is laziness. None of that is weakness. And none of it can be solved by telling someone to "just be positive."What looks like distance, tiredness, or frustration might actually be someone trying very hard to hold themselves together.

Here are some examples of phrases that may be meant to encourage, but they can feel dismissive or hurtful instead

•  "Just try to be positive."

• "It could be worse."

•  "Everything happens for a reason."

• "You're too young to feel like this."

•  "Just push through."

•  "You don't look sick."

• "At least it's not worse."

These words can minimize real pain, real fatigue, and real fear. Comparing suffering does not make anything easier. Ignoring pain does not make it go away.

Sometimes the most healing words are the simplest ones.

• "I believe you."

• "I'm sorry this is so hard."

• "You don't have to prove it to me."

• "How are you really feeling?"

• "I'm here."

• "You don't have to push through today."

• "What would help right now?"

• "You are not a burden."

These responses create safety. They let someone know they don't have to explain, defend, or minimize what they're going through.

Support doesn't have to be complicated. It often looks like small, steady acts of care.

• Believe them when they say they don't feel well

• Don't take cancellations personally

• Be flexible with plans and expectations

• Check in even if they don't always respond

• Offer help without guilt or pressure

• Learn a little about what they're going through

• Listen without trying to fix everything

• Support them on both good days and hard ones

• Remember their energy may be limited, even when they look fine

• Ask how they really are, and be ready to listen

The most powerful support you can give is not perfection, but presence, belief, and patience.

A Sample Letter

Dear __________,I wanted to share what my days really look like now. I don’t look sick, but this (chronic illness—this life-altering event)—is very real. From the moment I wake until I finally rest, I’m fighting to keep going in a body that feels unpredictable and exhausting. Some days I can show up, laugh a little, do some things. Other days, even getting out of bed takes everything I’ve got. I’m trying my best, always. I want to work, socialize, live fully—but this invisible weight makes it so hard.

My biggest fear? Becoming too much for you. No matter how hard I push, I worry this turns me into a burden for the people I care about. Even with your reassurance, that fear sits heavy.When I say “I’m fine” or “It’s not that bad,” it often means:•

• I’m overwhelmed and don’t know where to begin

• I’m struggling too deeply for words

• I don’t want pity—I just want understanding

• I don’t feel safe opening up yet

• I’m protecting you from how hard this truly is

• Everything inside feels like it’s unraveling

What I long for isn’t sympathy. It’s you seeing me. “I hear you. I see you. You’re not alone.”

You don’t need to fix it or understand every detail. Just listen. Remind me I still matter.

Sometimes that’s all it takes to keep going. Not every “I’m OK” is true. Not every silence means I’m handling it. Talking about the pain can hurt worse than silence. Sometimes I just need you by me.

Thank you for loving me through this. Even when I vanish, seem distant, or can’t show up—your steady presence anchors me. You make space for the real me, not just the version that performs.

With all my heart,

[Your Name]

Coping with life altering events and chronic illness support