After a heart attack, heart surgery or a cardiac event when you come out of hospital it isn’t the fix that most people would think.

You can help!

It’s only the beginning of a long road back to recovery. Both the survivors and their loved ones need support and understanding. The event can and indeed does change not only survivor’s lives, but the lives of those around and close to them.

With the best will in the world you try to help someone you love and care about. You want to support your cardiac warrior. But it doesn’t always go the way you planned. Sometimes you may think that your words and actions will make your loved one feel better. When in fact they get more upset, frustrated or angry. Your intention is always good and yet it leaves you feeling like nothing you can say or do will help.

In 2016 I ruptured my Achilles tendon, had a heart attack and was diagnosed with breast cancer. I had my moments where no one could do right for doing wrong.

Here’s some ideas to help you, help us. We are in this together.

 

“You look really well!”

At a guess I would say that you want us to feel great and that things are improving. You are complimenting us and want to raise our spirits.

However, just because we ‘look good doesn’t mean we feel good’. Like many of the invisible diseases what we look like on the outside doesn’t match with how we are feeling inside physically and emotionally.

How you can help … when you say things like ‘You’re looking great” you have a positive intention to make the person feel good. Do make sure that you also acknowledge that they may not feel 100%.

“You should get out there walking or go to the gym”

Again, your intention is a good one, you are hoping to motivate us to get out there and strengthen our bodies. Dr. Shad Helmstetter explains in his book What to Say When You Talk to Yourself, when we tell ourselves or others that they “should” be doing something, we’re implicitly reinforcing the idea that they’re not doing it.

How you can help … suggest doing something with us, going for a walk or joining an exercise class, you can encourage us to do with you.

“You mustn’t eat that!”

We do know you are trying to protect us from making the wrong food choices. You want us to be fit and healthy. To us though we feel like we have no choice, it’s a bridge too far and it feels like nagging.

How you can help … understand that everything in moderation is fine. Help us find alternatives that still give us the satisfaction. Change your choices with us; if it’s not in the house then we can’t eat it.

“What’s wrong?”

You want to help us and you don’t know why we are feeling and acting the way we do. We will have good and bad days and sometimes we haven’t a clue why or what’s wrong. It’s just how we are.

How you can help …. Accept and expect that it will happen and might be for quite a while. Acknowledge that we aren’t feeling chipper and remind us to be kind to ourselves and that it will pass in time.

“Don’t be silly what are you worrying about?”

For you it does seem silly, especially if it is something we used to do without batting an eyelid. You really want us to see that it’s nothing to worry about. But to us even the little things seem impossible and our confidence is at an all time low. Our bodies have let us down, we have let our bodies down and everything is different now. In the first few months after my HA I wouldn’t leave the house. Eventually a friend persuaded me to go out for lunch. Even then I would I would only eat in a restaurant directly opposite my GP surgery.

How you can help …. be aware that what is ‘simples’ for you may not be to us as we are recovering. There is no time limit when everything goes back to normal. We are trying to work out our new normal! Help us take it one step at a time, my dad always says ‘inch by inch is a synch, yard by yard is hard’. Baby steps and we will get there with your support and encouragement.

“Why are you always tired?”

This is something that I really didn’t understand before I had a heart attack and cancer. You probably don’t either; you can see we sleep a lot and expect us to have energy but we don’t.

It’s something that I just can’t explain but it is fatigue, tiredness and lethargy like I have never known before. No matter how many hours of sleep I get I still feel tired. It could be due to the damage to my heart, it could be emotional exhaustion, and it might be my body and mind still healing. We also take medication that slows our heart rate and lowers our blood pressure. We also experience difficulty sleeping and staying asleep.

How you can help … There isn’t a lot that can make a difference but asking us why or telling us to go to bed early doesn’t help. Make sure we tell our doctor and that we get blood tests to check our vitamin D and iron levels. Understanding can make a real difference as we are often just as irritated ourselves.

“Come on eat something!”

Initially for a few months my appetite completely disappeared. My friends and family kept on trying to feed me up as a sign of love. It just frustrated me and made me feel bad to waste food.

How you can help … be patient with us. Give us only small quantities of food. This can help as it means we are not overwhelmed by the amount of food on the plate. If we do finish it, it feels like a complete meal – what we see, and empty plate makes us feel good.

“Stop being so picky or a perfectionist!”

Sometimes when we have a good day we can do many things and feel that we do them well. But when we are having a not so good day, these things can be impossible. We feel frustrated when we know we used to be able to do something and now we can’t. It is difficult and we aren’t happy if it is not the way we wanted it. Our inability to do things that we used to do affects our well-being. We need to have purpose and value in our lives and to feel achievement.

How you can help … just understand, don’t try and make it better as nothing can make it better other than time or acceptance for us. The physical and emotional changes caused by a heart attack or other cardiac event can have a huge impact. Let us know you are there for us and will happily help if needed and asked.

“I just don’t understand you!”

Post heart attack I realised that unless you go through it the impact of a heart attack is unimaginable, as are many other life changing events. I was supported by wonderful friends and family, I know it wasn’t easy for them. Many years ago one of my closest friends had a heart attack. When I visited him in hospital I appreciated that  he was really ill but thought that once he was home he was OK. Since my own heart attack and recovery I now understand this is so not the case. I watched my friends and family try to understand as I became anxious, scared and lost confidence.

How you can help … Listen, actively listen sometimes we just need to be heard. You don’t have to try to give us the answers as sometimes there aren’t any, we really want to know we are not alone. It could help to join a facebook group.

My Heart & Mind Community Facebook Group
This group is primarily for cardiac event survivors. Family and friends are most welcome too. It’s a relaxed group where people share experiences, problems, laughter and supports each other on their life journey. It helps to find out that others have been through it, have some insight and you feel less alone.

You can also find more information by visiting bhf.org.uk, heartuk.co.uk and disability.co.uk.

All in all there is no right or wrong thing to say or do. I’ve made a few suggestions that I wish I had been able to share when I was feeling fragile and unwell.

I hope this helps you if you are recovering and gives you a reminder that everything that people say and do comes from a good place and is because they care. If you are a confused friend or member of the family, I hope that this gives you an idea of what is going on for us how we may be feeling and thinking. Ultimately I hope it helps to communicate our needs and save those awkward moments.